These belts are pricy, but they also seem to offer some protection to your stoma if you play really rough. There are, of course, a variety of belts and wraps out there that are much cheaper, for those of you who don’t need a shield around your ostomy and can protect it fine on your own.
In this video, Maggie models The Equalizer, an ostomy support product by Stomaplex.com. In full disclosure, Maggie was paid to create this video, and Nadia and I haven’t tried this product ourselves.
The Equalizer seems like a pretty handy product for getting a tight seal on your ostomy flange. However, at $34 it is significantly overpriced: it’s just a short length of clear plastic tubing, after all. You could go to any hardware store and buy a small length of plastic pipe that does the same thing: just look in the plumbing section (check out this short length of plastic pipe at Lowes for $0.61!). Just measure the width of your appliance (the ring, so you know how much space you have around your stoma), stroll through the plumbing section, and basically get a useful appliance tool for pennies.
Here are some tips on helping deal with stress. Mostly intended to assist in dealing with stress when you have inflammatory bowel disease, but these are good tips for anyone. Although this is a serious subject, it became difficult to film this video at times. Many times I use bullet points on topics I want to cover, but it is difficult to think ahead of all the points I want to make. I show my frustration in the end of this video with a couple of bloopers!
“Give your stress wings and let it fly away.” ~Terri Guillemets
Some time back I had come up with this idea to try to explain to others, what is inflammatory bowel disease, and although I could describe my own situation, I decided to broaden my search in describing IBD by asking others how they would describe it. What words would you use if you were asked by someone that does not have Inflammatory Bowel Disease to make them understand what we really go through? Hence, my idea for this public service announcement was hatched.
Along with our own thoughts and descriptive words, we put it to music: Boyce Avenue–Skyscraper cover. The lyrics are perfect as they talk about how you can be broken down (in this case, by illness), but you can rebuild and come out stronger. That’s what we all hope and strive for. This is a message of HOPE.
Maybe this can be a way for others to have an idea through our words even if they never understand how it feels…
“Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back in amazement at what you have been through and you will ask yourself… ‘How did I get through it all?” ~Unknown
Since my recent permanent ostomy surgery, I have been thinking a lot about living the rest of my life as a permanent ostomate and how that will impact all the things that I want to do. Honestly, the way I have been doing for these past 2 months since surgery has made me feel that nothing can hold me back now. I believe that having this ostomy gives me the freedom to do so much more than I thought that I ever could, and it poses no interference to all that I can see myself doing. I am very sensitive and tuned in to so many other people that are on a similar journey and have watched as they, too, have made similar improvements with their health since their ostomy surgery or going through the challenges of this disease. Putting myself out there and sharing my story has given me the rare opportunity to meet others and hear their stories as well.
Many people share their history through their illness, accomplishments, challenges, photos, videos, and through all I am inspired by their tenacity and strength as they persevere. Often, I receive something that inspires me to share with others. There are many such stories that need to be told and this is a great arena to share…this is one such story.
Recently, I met Kate (from Australia) through the United Colon Vlog. Kate does not have inflammatory bowel disease, but she has been challenged for more than a decade with a prolapsed bowel or full thickness rectal prolapse at the age of 18. Although not the same, her symptoms very much mirrored that of a person suffering from IBD. After 5 major surgeries, she now has a temporary ileostomy. She told me recently that she will probably face permanent ileostomy surgery in a couple of years, as there is no quick fix, and her surgeons believe that a reversal will probably be unsuccessful.
Kate has not allowed this to hold her back. Not that long ago, she traveled to Canada from Australia with her husband. During her trip, her husband photographed her in various places showing her ostomy. She sent me a message in my inbox with the photo gallery attached, and with every photo, I just kept getting the goosebumps as I saw her accomplishments in every portrait. My heart connected with her immediately and I kept saying to myself “Oh my gosh, Kate, look at you!!” I actually felt the stinging of tears as I was so proud to see this because for some time now, I have been communicating with her, and I know parts of her journey and how hard this has been for her. To see these photos is so incredibly liberating. As much as she says that I inspire her, she inspires me–so much that I wish to share some of her photos and will be displaying additional photos on the United Colon Vlog fan page on Facebook. Her husband did an amazing photographic depiction to give the feel of strength and remarkable accomplishment for someone who has been through so much.
Kudos to you, Kate! May you continue to inspire. Thank you for having the courage to share these photos and your story and allowing me to show them. And thank you for being my friend. I know this may have been difficult, but your willingness to open yourself up to others will touch the hearts and lives of so many people across the world. It did for me! You rock, Kate!!
Instead of saying, “I am woman hear me roar” we can restate it to say “I am ostomate, watch me soar.”
Much love,
Nadia
Kate at the top of Mt Edith Cavell after hiking for almost 3hrs. Her greatest accomplishment so far.
If you have photos to share, proud moments of you overcoming the challenge of your disease, a huge accomplishment, please email me (Nadia@UCVlog.com) or message me on Facebook so that I can share your story with others. We can all inspire one another. Let me tell your story.
Dennis arrived to Texas for a long hardworking weekend to update our duo-videos for the website. But what is a working weekend without a little bit of fun?? After a long afternoon of taping, we decided to head out to Dallas to the House of Blues and a quick tour around the city. Heading back to my house to film some more videos with our special guest and friend Hannah Hale, we polished off another couple more videos and dove into a fantastic dinner of my favorite dish—chicken makhani with naan. We will be vlogging and blogging more about this in upcoming posts. But, being that this is autumn and Halloween is right around the corner, I planned an evening of pumpkin carving to top off the night!
Both Dennis and I had a plan to incorporate our experiences with IBD into our pumpkin creations but neither one of us had revealed to the other what their idea would be. With Hannah, and also my cousin Aneesa joining us, the four of us planted ourselves on a large tarp in the middle of my living room, turned on Game 7 of the World Series, and got down to some serious pumpkin carving!
We had so much fun talking and laughing the time flew and before long our pumpkins began to take shape. We wanted to reveal our creations to you here:
Dennis’ is aptly named: “Been there, done that!” With his vomiting and pooping pumpkin. We can all empathize with this poor guy!! Mine is “Corn NEVER digests!” my poor skeleton who has been ingesting the infamous seasonal candy corn and like anyone with an ostomy or digestive disease, corn is so difficult to digest! So this was my spoof on undigested food that comes out the same way it goes in!
So stay tuned to see more vlogging and blogging about our weekend, coming soon! Have a Happy Halloween!
Charis, a graduate student in North Carolina, recently had ostomy surgery about 4 weeks ago. She made all of these fashion videos recently showing her fashion tips with an ostomy. She’s doing really well for 4 weeks post surgery, so keep that in mind, those of you who are facing surgery: the recovery time varies from person to person. Now, I’m not sure if her surgery was just a takedown surgery or the full-blown surgery. If you want to ask her questions, contact her at Full Frontal Ostomy, or visit her Facebook page.
On a side note, I hope the guys in the audience aren’t getting too discouraged by all the women and ostomy videos recently. Women, for some reason, seem to be far more open and outgoing when it comes to making videos (at least good videos). Rest assured, we’ll post good videos from all perspectives of people living with colon diseases as we come across them.
It is interesting how having IBD changes the way that you view the world around you. In most homes the bathroom is overlooked as an essential but secondary room of the house. However, when moving, staying in hotels, or visiting, I always check the bathroom first. Partly out of habit, I make sure the bathroom is suitable because the amount of time spent in there has made it a priority that the bathroom has to be up to par. I do not want to be additionally uneasy for the duration of time I am spending in there.
Here are some interesting articles called “Ode to the Commode”– they talk about the toilet and how it affects the environment and the pocket book. Also, there is some interesting historical fun facts to ponder. For those with IBD you may find a few of the facts interesting and the tips worthy of some consideration especially when that is one of our most occupied seats in the house….
“The toilets at a local police station have been stolen. Police say they have nothing to go on.” ~Ronnie Barker
(ok, that was lame, but funny. I couldn’t resist!)
When this journey began almost five years ago, there was no plan on how this was all going to play out. The doctor did not hand me a life manual and say, “Here kid, this is the book you are going to need to get through the rest of your life. It is the instruction manual on living with IBD. It’s going to tell you everything that will happen to you and how to survive it.” Ha! I wish!!
Like most people, when dealt a blow hearing the news that they now have an incurable lifetime disease, you are not thinking straight. You sit down and slowly digest only the words because you have the worst time trying to digest anything else. No pun intended. I didn’t ask for this. I didn’t stand in line all night waiting for tickets to the “Inflammatory Bowel Disease Show” hoping to get a front row seat. No! But, like so many times in life, the unpredictable happens. Circumstances can rear their ugly head and one is dealt a blow so crushing that puts into perspective many things that pale in comparison on the “this-is-the-worst-day-of-my-life” scale. Forgetting to record my favorite TV show, smudging my nail polish after a perfect paint, not getting my assignments done on time, losing friends, losing love, and watching life pass me by all fall short of having to deal with real life and death decisions, battling severe infections, undergoing numerous surgeries, chronic illness, and planning life around health. Suddenly, you have an epiphany that you truly cannot sweat the small stuff. Time is short and precious; dwelling on the “what ifs”, or the coulda, woulda, and shoulda will eat you alive. Your GI tract is already doing that for you. Try to turn your brain off once in a while or you will become a victim of your own destruction. I know because I do this sometimes.
Welcome to cyber world
I decided when all this began that I had to take some sort of initiative to get my story out there. I chose to put myself in a place where others could learn and benefit from some of the ups and downs I experience through this disease. Since that time, many others have done the same. I won’t say I was any sort of pioneer in vlogging about IBD, I will leave that to Dennis, truly because I was inspired and motivated by him to begin this path. However, I have learned some very valuable life lessons about putting one’s self out on the internet to have others follow you and your journey. One very profound and repeated lesson is that internet is not “real life.” The people know you only from what they see and hear or what you are willing to show them. So with that, you get people who are not always kind or others who are a bit too nice; complete strangers who want to marry me because they have seen my videos and of course they now know me completely to decide that I will make the perfect wife. Ha!
When telling my story, I open the door to telling people not only that I live with IBD but also personal details about my life. One is that I am of mixed culture. I am half Pakistani and half Caucasian. Interestingly, this creates unease in people. Either, I am not Pakistani enough or not American enough for some people, when I think I am doing just fine the way I am. Besides, this has nothing to do with IBD, and for the most part people don’t care about the fact I live my life with a foot in two cultures–I was taught tolerance and a love for two countries and faiths. But, some people have intolerance for things they don’t quite understand, and instead of looking at my message of health, wellness, and how I cope with IBD, the focus shifts to something completely irrelevant. I am told that I should be dragged by my hair back to my country and have my head cut off. I want my head to stay on, thank you very much! I am happy right here in the USA, so I am not sure of which country I am supposed to be dragged back to. I have gotten marriage proposals from individuals-–complete strangers wanting to take care of me–whom have watched my videos and believe that I was the girl slated in life to be theirs. More recently, I was sent a lovely inbox message of which was written partially in Urdu, partially in English. I could understand some but not all. I asked for help to interpret it, but it was so bad they felt uncomfortable telling me the content of the message. “Haters are gonna hate, Nadia,” I was told. Really??? What is there about me to hate or even dislike for that matter?
If you’re going to hate, hate the disease
Well, haters, here is the real truth; this is who you are bullying. A 5’3” 20-year-old girl who weighs almost 120 lbs. (Just the visual alone is enough to pose a serious threat!) I sit at home and watch NCIS and Law & Order while I crochet gifts to give to people, a girl whose phone barely rings because people are busy living life while I am busy getting better and stronger after surgery, a girl who prays every day for things to improve so I have a chance to see what all the fuss is about in the world, a girl who works from home 12 to 15 hours a week at a job that was like a life preserver when I was drowning because all the people I work with understand me better than most, a girl who learns her disease and illness inside and out because I have to try to take control of at least one thing in my life and knowledge is power, a girl who loves shoes, a girl who is waiting to go back to school and for life to really take off, a girl who has taken a rotten situation and tried to do something good about it because I know no other way to exist. Don’t judge me when you don’t know me.
I have a “whatev” attitude about this. If you’re going to choose to hate, hate the disease, not the person. If you choose to hate the disease, there’s going to be a lot more people on your side that will join you in that type of hate! I am inviting you into my life and trusting you not to hurt me. I am just a girl trying to live life with inflammatory bowel disease and not let it rule every aspect of my existence. Now, if that poses a threat to you then so be it. There is a lot more to me than what you see on the internet.
I can’t change the way people think or feel, but hopefully I can educate them about a disease that affects millions of people across our globe–no matter who you are, where you live, the color of your skin, the ethnic make-up of your being, who your parents are, or any other inconsequential thing that has nothing to do with this illness. So, gladly I will take the bad, you can say what you want, and think what you want. “You can love me or hate me, I swear it won’t make me or break me.” It won’t stop me from doing what I am doing because in the end, good always outweighs the evil. I am no one special. I am just Nadia. I just hope that what I do–and continue to do–is of true benefit to others. There are so many of you who make doing this all worthwhile. So yeah, haters are gonna hate, it’s true and there is not much you can do about it. Just remember, what goes around comes around–this is advice from my daddy.
“You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.” ~Maya Angelou
