But, I digress. I designed this page to be more of a "tips and tools of the trade" for ostomates the world over. Information contained here may help address a nagging concern or problem confronting you. It is not designed for non-ostomates, so the information contained assumes a general level of familiarity regarding living with an ostomy and all of the joys and heartache that accompany it. If you have any tips, concerns or questions that you want posted on here, please drop me a line and I'll strive to include it ASAP. Cheers!
First things first: the Vancouver Ostomy Association created a handbook that Ostomates everywhere may find useful. I have attached a link to the pdf, here. Warning: it is not breezy and well-spiced like this blog. I have not yet read the whole thing, and admit to giving up on various sections of it several times. And can I just bitch for a second about the young, virile couple on the front? I realize that many new ostomates are from the over-50 set and I have no wish to discriminate against them. But, come on! You want ostomates to be comfortable with their reality, want us to stand up and be all sexy with them...so give us a decent model on the front, will ya?
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| Like her. Thanks, Jess. |
What I've Learned (Slowly) That May Help You (Quickly)
A) Keep a clothespin in your ostomy change kit so that you can clip your shirt up and out of the way for leaks and changes. I cannot fully express how grateful I am for this little invention: approximately 10 cents to purchase, and it saves you tonnes in laundry $$.
B) Keep Wet Ones (or other moist towelettes) in your kit as well – they prove eternally useful.
C) Don’t dismiss the belt right off the bat. I did, and I regret it. If you don’t know, the belt is a piece of white fabric that you can adjust to fit. It is designed to hook into the holes on the sides of your flange. If tightened properly, it will provide extra security by applying continuous pressure on the flange seal and helping it to stay in place.
D) With my permanent end ileo, I could get away with changing my flange once a week, and the bag every 3-4 days. My temporary loop ileo evidently hates me, so I was doing 4-5 changes a night due to leaks for a while. (fyi: sleep deprivation increases the frequency and severity of bitchitis). After consulting with my wonderful ET nurse, I am now using the belt and am using a skin barrier (different than the stoma powder) to help protect my skin. The winning equation is apparently barrier + paste + flange + belt – most fruits and veggies = ang sleeping through the night and not doing 5 loads of laundry a day. Now I am doing a full change every third day and it seems to be working a bit better.
E) Watch your diet. If you are finding that you have more leaks following your ingestion of certain foods, I would recommend eating them in moderation or even eliminating them. I understand your frustration with cutting out more things you enjoy eating, but honestly, you may come to realize that a full night of uninterrupted sleep may be worth more to you than carrots and dip. Maybe.
F) If you are worried about the possibility of leaks while spending the night at a friend’s place, there are several things you can do to mitigate your anxiety: You can bring your own sheets, you can sleep on a towel or you can bring your own air mattress so that if there is a leak you haven’t soiled or damaged anything that belongs to someone else. And, perhaps most importantly, discuss your concerns with your friends and family. By articulating your fears, I think you’ll find you feel better and not as stressed. I think you’ll also find that your friends and family are much more supportive and understanding than you think they will be – you just have to give them a chance.
G) Tape is awesome in a pinch. It can help hold the edges of the flange down or, in a mini-crisis, can act as a stopgap during a leak until you can get somewhere more private to fully address the problem.
H) Head’s up: if you use the “universal remover for adhesive barrier” wipes (a great invention that helps the user to peel tape off of IV sites, problematic bandages and flange tape without pain), be cautious about where you use it. A couple of times, particularly of late when I have done upwards of 5 full appliance changes in a day, I have used the wipes on the flange adhesives themselves because the skin is so sore. This is problematic later on because you do not get a good seal with the next flange – whatever is in the wipes is absorbed by the skin and remains for a while. Showering between changes does not entirely neutralize this problem.
So, if you have CD, researchers are encouraging you to speak to your siblings and/or offspring about participating. If you have a full-sibling or parent that suffers from CD, and are between the ages of 6 and 35, you are also invited to participate. More information on the study is available here. Remember, it is research and programs like these that are challenging what we think we know about Inflammatory Bowel Disease and may, one day, be the key to breakthroughs for all of us. (I could also add a resounding: "do it, you selfish bastards!" but I am a bigger person than that. Marginally.)
Questions to Discuss with your Doctor About Drug Therapy:*
- Is drug treatment of my IBD necessary?
- Is the treatment intended to bring a flare under control or is it intended to maintain a remission?
- What benefits can I expect from this treatment? What symptoms will improve and what symptoms are not likely to improve?
- How quickly can I expect to see an improvement?
- What are some of the common side effects?
- What are the serious side effects that can occur on this therapy?
- Are there any other options for drug therapy in my situation?
- What is the cost of treatment?
- How long will I have to be on therapy?
- Is surgery a viable option in my situation?
Ahh travelling. New horizons, exciting climates, and different ways to enjoy little fruity drinks with umbrellas in them. Priceless. However, I recognize the anxiety you may feel regarding travel, particularly air travel.** Aside from rigorous security, and restrictions on hand luggage (aka ostomy equipment), I personally had great trepidation regarding travel itself: does your bag inflate or deflate when cabin pressure changes? What if you need to to go to the bathroom while the seat belt sign is on? What if you have a leak and all of your clothing is unhelpfully in the belly of the airplane, juuuust out of reach?
Fear not, my ostomate friends! Crapbag is here to (partially) ease your fears and tell you that travelling with an ostomy*** is not impossible. Nor will I lie to you and tell you that it is entirely stress-free (but, really, what travel is nowadays?). However, with the proper preparation and planning, it can be relatively painless. And the payoff is huge when you finally get one of those drinks in your hand...ahh, bliss. So, I give you the following:
Crapbag's No-Nonsense, No-Fuss, No-Muss, Travel Time Fun-A-Thon (inator)
- The big 'un: How to thwart the dreaded, evil, full-body scanners at airport security. If I'm honest, when I first heard about these badboys, I was concerned that it was simply another mechanism designed with the express purpose to humiliate me in public. "Oh, what's that you have there, Miss? An osto--what? What's in that bag? It's not cocaine is it? I'd really have to check to make sure...What? Why don't you want to show me in public? You're acting very suspiciously for someone who says that they're a patriot. Perhaps we should go in this special room where the acronyms of several government organizations will be represented...Oh, and you'll never, ever make your flight on time (and may never be seen again, ever.) 'Bye and thank you for flying with us."
- But, no. I'm not making an argument here about whether such stringent security measures are actually necessary or constitutionally valid. Such an argument is liable to turn me into a raving harpy and is entirely beyond the scope of this blog. Instead, I will say that they are a reality and the best defense (aka the best way to avoid the humiliation I foretold in the dialogue above) is a good offense. So, take precautions and do what you can before you get to the airport to ensure a smooth turn at security.
- Print out the United Ostomy Association Travel Communication Card. It can be shown to security officers if there are any problems during scanning or a pat-down. It can also be used on-board the flight to show to flight attendants. If you are open with them about your potential need to use the washroom even while the seat belt sign is on, they will probably prove more inclined to be understanding of your situation.
- Have your doctor fill out the travel certificate. Keep it with your passport and boarding pass so that is accessible while you go through security. It will help advocate for you and your rights should any hiccups or problems occur with security.
- You may also find it helpful to have a doctor's note on hand, detailing your precise medical condition and the equipment you have with you.
- Bring any and all prescription medications with you in their original container. Some countries are (understandably) wary about the transportation of certain types of medications, particularly if they are opiates or narcotics.
- Bring THREE times as many appliances (both bags and flanges) as you would ordinarily use for the same time period. Travelling, and untold climate and lifestyle differences, can have a drastic affect on how the ostomy supplies hold up. By bringing it with you, you avoid the hassle of having to try and ship some in, or hunt some down in a foreign country.
- If this ever becomes a problem, the International Ostomy Association may prove useful. They have regional offices in many parts of the world and can potentially assist in locating or advocating for the products needed.
- Several ostomates have also claimed success by bringing photocopies of the ostomy appliances in question. The catalogue pages for Coloplast, Convatec and Hollister are a great resource and can provide both visual and numeric cues to aid your search (make sure the copies have both the picture of the appliance and the product numbers).
- Make sure you have necessary supplies in more than one place: some in your checked baggage and some in your carry-on. The bulk of the supplies can go in your suitcase, but it may prove prudent to have several appliances with you in the cabin, in case your baggage gets lost, or you have a leak while in transit.
- The TSA does not have a clearly stated policy on whether medical scissors are allowed in hand luggage. As a precaution, I would recommend pre-cutting your carry-on flanges and bringing scissors in the larger ostomy kit that is in your checked baggage. While some security officials may let you through with scissors of a certain size or length, it just seems safer to pack the scissors and fly without them. Crapbag is all about avoiding hassles.
- I hiiiighly recommend bringing a change of clothes with you, just in case you do have a leak while in transit. It doesn't have to be high-class, I just bring whatever can fold/roll up with relative ease; normally tights and a t-shirt. I make sure that whatever sweater/coat I am wearing (if appropriate to your situation; I am Canadian!) can work with both the outfit I have on and the one I may have on by the time we land. Done and done.
- I have also realized that bringing a travel-sized container of laundry detergent can prove to be a life-saver. That way you can hand-wash or soak anything that might have been stained, to avoid racking up those laundry $$. Those dollars could instead buy you alcohol, after all.
- One thing I should probably say is that preparation seems to erase the necessity for it. That is to say, whenever I plan for the worst to happen, it usually never does and it feels a lot like overkill. I remember flying to San Francisco last year and I had my travel certificate all-prepared, my doctor's note and medication all clearly labelled and ready for inspection. I winced as I went through security, sure that there was something that would set the sensors off, security would pat me down, and my horror story would begin. And then...nothing. No beeping, no pat down, and no questions. It felt like a whole lot of stress for nothing. Stuff seems to only go wrong for me when I don't plan on it, i.e. quickly running out to the store, forgetting my purse (with my ostomy change in it) and having a leak in the produce section...these types of moments never go well for me.
“Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do. So throw off the bowlines, sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” -- Mark Twain
* Taken from A Hillary Steinhart's book "Crohn's and Colitis: Understanding & Managing Inflammatory Bowel Disease." (2006)
** Interesting (and personal) thing to note here: my most disastrous trip was not on an airplane at all, but rather on a VIA train trip between Toronto and Ottawa. Maybe because it wasn't as "epic" as a plane trip, I didn't properly prepare. I had a leak, didn't have scissors in my carry-on to properly fit a new flange, and didn't have an accessible change of clothes with me. Added to that, the rocking and swaying of the train washrooms are absolutely un-conducive to doing anything remotely medical (or, for that matter, standing up). But, like everything else: it had its moments, I was humiliated, and I survived it. In the words of my hero, Jed Bartlet: "What's next?"
***In my original posting of the travel section I wrote "travelling with an ostomate is not impossible." That is not what I meant, so I corrected it to the proper word "ostomy". However, upon reflection, I think friends and family who have travelled with me and my ostomy would probably prefer the first incarnation. I do tend to complicate situations that have no need of it. I am fairly certain I do this without the help of "shithead", though the only way to be certain is to see how my next trip (post-re-attachment) goes. I'll let you know...
