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What Ostomates Want Everyone Else To Know

Wednesday April 23, 2014

When I had an ostomy, I kept it to myself, mainly. I didn't sport a bikini that summer, or even necessarily get involved in advocacy. I knew it was for a short time in my life, but I also knew that I could always go back to an ostomy if needed. I had never known another person with an ostomy, at least not personally. I had met a few here and there, especially when I was younger.

I will never in my life forget my first post-surgery visit to my colorectal surgeon's office. The office staff commented on how good I looked (I was only 26 -- I never looked ill even when I was). They expected me to appear pinched and drawn, maybe even hunched over, clutching my abdomen as I walked. To be sure I had many staples in my abdomen and was presently upright mostly due to the painkillers in my system, but their attitude shocked me. What did most people look like at their first post-surgery visit?

Recently this got me to thinking about what many people think about ostomies, and how untrue most of it is. Even me, before I underwent the surgery myself, didn't really know what to expect. And I didn't run around advertising the presence of my little stoma, but I certainly didn't hide under bulky clothes, either. I put on my flat-front pants and went to work as if everything was just the same.

And so, thus, perhaps much belatedly, I present what I would tell people about my ostomy (when I had one). Would you add anything to the list?

Things People With An Ostomy Wished You Knew

Image © CÚcile Graat

Ostomates In Space?

Monday April 21, 2014
NGC 5793

Recently I've been listening to podcasts while working or going about household chores, and Star Talk Radio has become a favorite. One of the episodes dealt with all manner of practical items when it came to space travel -- including pooping. Now, in space there is no gravity, so there is no up and down. In addition, anything in the cabin of the spacecraft or the space station just floats around. This is true for everything from a dirty sock to food to human waste. You don't want anything wet, including body fluids, being set loose to roam about the cabin on their own. It could be disastrous, not to mention embarrassing and a potential health hazard.

Therefore, special commodes were designed for space travel. Different countries have slightly different designs, but they tend to operate similarly. The toilet is a vacuum, essentially sucking waste material into it and away from the body. This does require a certain amount of technical expertise on the part of the operator -- you don't just plant your bottom and go to. You must be in the right position, and training toilets available on Earth include a closed-circuit camera that can help a body to get in the right position.

Naturally, I was intrigued by the ingenuity of NASA to come up with such a way to deal with the most natural of biologic functions. And thinking about how this would work, and if it works when one has diarrhea, led me to think about people who have an ostomy -- either urinary or intestinal. For them, using a toilet in space is not really that much of a stretch. Emptying a bag in zero gravity could itself be fraught with peril, but if one used closed, one-use pouches or connected the pouch to a vacuum, it would arguably be easier than the "usual" way of doing things.

Obviously, many ostomates are not in a position to become astronauts, but I thought it was an intriguing idea. Perhaps one day an ostomate could go into space, and the whole "bathroom" issue might be simplified.

More about space poop:

Image © NASA, ESA, and E. Perlman (Florida Institute of Technology)

Gearing Up For A Charity Walk

Friday April 18, 2014

Now that spring is here in the Northern Hemisphere, and snow is melting across the temperate areas, it is now becoming time for the spring and summer charity walks. Many inflammatory bowel disease (IBD) organizations (such as the Crohn's And Colitis Foundation Of America [CCFA]) hold runs and walks in order to raise money. The funds raised are put towards everything from IBD research to public education efforts. In the case of the CCFA, walks are held all spring and summer across the United States.

The thing about participating in a charity walk is that if you don't walk regularly year-round, it might be a challenge for you when you do a charity walk or two during the summer months. Not that it is impossible, and not that you shouldn't walk to in support of the causes that you believe in. But, you will want to start thinking about getting your body ready to walk as soon as you possibly can. Even if you're reading this a few days before your walk, there is still something you can do. But, ideally, you are thinking of getting ready for your walk a month or more ahead of time.

At whatever level you're starting, our Walking Expert, Wendy Bumgardner (AKA Walking Wendy), has her Once-A-Year Walker's Survival Kit just for you.

National Healthcare Decisions Day

Wednesday April 16, 2014
April 16 is National Healthcare Decisions Day. This is a day where adults are encouraged to plan for their future care by providing information about their wishes for their own healthcare. Having these plans in writing helps healthcare providers to care for a patient in the way that the patient prefers.

Why is this day important to you? With chronic conditions such as IBD, healthcare decisions may need to be made quickly. When patients provide that information in advance, healthcare providers can make choices for the patient that are in accordance with the patient's beliefs.

I encourage you to have an advance directive. I also hope you will speak with those closest to you about your wishes for your care, particularly as they relate to issues surrounding your IBD. This can include decisions about medications, surgery or surgical complications, and mental health care.

More about talking with your family about healthcare:

YRC Youth Rally

Monday April 14, 2014

Wanted: Kids between the ages of 11 and 17. Do you ever feel like you are the only teenager with an ostomy or j-pouch? Do you have questions and concerns that no one can help you answer -- because you don't know anyone else with an ostomy? Here is your chance to meet other kids at the 2014 Youth Rally who are just like you, and have a great time doing it!

How Do You Get Better Sleep?

Friday April 11, 2014

Sleep can be a huge problem for people with IBD. And not just because of waking every few hours to go to the bathroom, although that's a large part of it. There may also be abdominal pain or night sweats. Some people find they suffer from insomnia because of drug side effects, or anxiety and restlessness. Working on developing better sleep habits for yourself can go a long way towards mitigating these problems that disrupt your sleep. Sleep is important, and most of us don't get enough, therefore it is worth taking the time to clean up sleep habits and get into a better pattern. What can you do to help yourself get restful sleep?

More on IBD and Sleep:

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Image © Lotus Head

What Caused Your IBD?

Wednesday April 9, 2014
This sounds like a very serious question. And it is. We don't know what causes inflammatory bowel disease (IBD). The theory right now is that IBD is caused by a combination of genetics and environment. You might carry the gene, and then something (or a combination of somethings) happens that flips the switch and turns on the IBD.

For me, IBD really runs in my family. I had a mysterious rash one year that we suspected was Lyme disease. I had spent the summer doing local "clean-ups" and had spent a fair amount of time running around in rivers, streams, fields, and wooded areas, so it was not an unreasonable suspicion. I was treated with antibiotics for suspected Lyme disease, and the next thing I knew, the symptoms of ulcerative colitis had set in that fall. I'll never know for sure what exactly caused my IBD, but it does seem as if the events of that summer had something to do with it.

How about you? What caused your IBD? Does it run in your family? Did you get diagnosed after a stressful event? Use the "comment" button below to tell me about it.

What would be in YOUR dream bath?

Monday April 7, 2014

Top 10 Ways to Make Your IBS Flare

Friday April 4, 2014
It's Irritable Bowel Syndrome (IBS) Awareness Month! IBS is a poorly-understood digestive condition that affects an estimated 20% of the population. In some ways we're bumbling around in the dark to know what's going on with people who have IBS. What we do know, in many cases, is what can set off the symptoms of IBS. That's the good news. The bad news is that many everyday activities and foods can set off IBS symptoms. Here I'm going to tell you the top things that you can do that will almost certainly cause your IBS to flare. Do you know what they are? How many of them are you doing?

NSAIDs (Non-Steroidal Anti-Inflammatories) and IBD

Wednesday April 2, 2014

If you have a backache or a headache, do you reach for the over-the-counter pain medications in your medicine cabinet? Most of us do. And people with inflammatory bowel disease (IBD) might experience just as many, if not more, aches and pains, than other people. The problem is that if you have IBD, you'll want to be very careful about what painkillers you take because some of them can set off a flare-up. That does leave people with IBD in a difficult position when it comes to treating pain from arthritis and other painful conditions. There is one alternative, however, that is open to people with IBD. Learn more about NSAIDs and IBD.

Image © Reena Young

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