Since resuming the ostomy supply donation drive several months ago after moving to Texas, it has had an overwhelming response. I spent a night this past week working on the supply inventory and was so thrilled by the wonderful outpouring of support from all of you that sent in your donations.
As most of you know, I have had numerous surgeries: two time temporary ostomate and now live with a permanent ostomy. When I had my first surgery it was around the time of the devastating earthquake in Haiti. Feeling compelled to do something to help and unable to travel, the idea came to me to collect medical supplies, specifically ostomy supplies, as it most relates to me and my condition, but over the years, we have received supplies of all kinds–always new, always unused, and still packaged. In most cases, a temporary ostomate is no longer in need of their supplies after their takedown or reversal surgery, or donations come from someone who has changed ostomy supply brands. Often times, a family will donate in loving memory of a relative that has passed away. I have been touched by so many people who have shared their stories and their journeys with me. I feel humbled and honored to be able to facilitate this type of donation drive.
Back Up and Running Strong
The items are all sent to my location here in Texas, I collect all the items and keep a count and inventory of each item sent. I store all the items appropriately, and approximately once or twice a year I hand them off to a larger facility and into hands of those that can get the supplies to those in need. If you recall my last drop off with Kay Doherty in Green Bay she had informed me that they were in need of ostomy supplies in countries such as Haiti, Bulgaria, and Chile, just to name a few. The supplies go into the hands of people in need. It was such a good feeling to know that, and I was inspired to make sure to continue this once I moved here to Texas. It took a little bit of getting going and finding a place to move our supplies, but I recently found a facility in Houston which I will be blogging about at a future date. Later this month I have arranged a meeting with the director to tour the new facility and learn more about how our supplies will be sent abroad. I am excited for this to take place and that we are all a part of this amazing effort!
Sorting through the boxes of donations
Last week, I began the task of unpacking all of the donation boxes and separating everything by brand (Coloplast, Hollister, ConvaTec, Nu-Hope, and others). I carefully and very methodically organized the counts on paper into categories such as pouches, wafers, skin prep, paste, etc. After several hours of counting, then I entered all the data into the computer on a spreadsheet where I calculate a per item cost to come up with a monetary value total. So, as you can see, there is a lot of time put into this process, but very rewarding in the end. This gives everybody an idea of how your donations are helping and we are able to see how this is growing. Besides, it helps me sharpen my math skills of which I so desperately need!
Oh What a Difference We All Can Make!
As of today, I have the great privilege to tell all of you, your donations have equaled nearly $26,000! We have collected over 11,400 medical supply items ranging from ostomy pouches and wafers for all types of ostomies to surgical tools, wound dressings, and medical travel kits. We had received a very large donation of infant ostomy supplies. This could never work without the willingness and kindness of all of you who have thought to donate to this cause! We are helping so many people who otherwise would have no access to these items.
All the supplies are counted
Before moving to Texas, I had met a woman who had to use bread bags and rubber bands in place of an ostomy pouching system. Can you even imagine what that would be like? The donations we collect are for people like her. So remember that when you change your ostomy pouching brand or if you have a temporary ostomy, and you have new unused supplies, think of this donation and send them over.
From my heart, I want to say a very genuine thank you to everybody who contributed to this amazing effort. $26,000 worth of supplies collected in less than 8 months!!! That is incredible! That’s a cumulative total of over $59,000 in supplies since beginning this donation drive two years ago! Let’s keep this donation drive going! Sometimes it hits me as I am counting supplies, and realizing how each person is a part of this. It gets very emotional; I am driven by that emotion to keep going and keep promoting this effort because we are all doing our part even in the smallest of ways–it makes the biggest difference. For more information, click here to find shipping details.
“For it is in giving that we receive.” ~St. Francis of Assisi
We haven’t discussed too often before on UCVlog about K-pouches or BCIRs, both of which are continent ileostomy reservoirs, mostly because not many people have them so there’s not too much information out there. But basically, these pouches are similar to a J-pouch, but attached to the abdomen, and they are emptied by inserting a catheter.
To get more information about this surgerical option, check out these two previous videos:
In this video, a woman who recently had surgery shows the tools she uses to empty her BCIR. She does not, however, show the emptying process. If you watch the two videos linked in this post, and then her video, you should be able to imagine how this pouch is emptied.
If you have questions about the BCIR, don’t ask us: visit Vanessa’s YouTube channel and contact her there.
Keep fighting,
~Dennis
Question:: Do you have a BCIR or K-pouch? Tell us how you empty the pouch and manage it.
There is an ancient Chinese belief that an invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but it will never break. That being said, I believe that everything happens for a reason and I am exactly where I am supposed to be in my life at this moment.
Setting the course
When I moved to Texas, following my permanent ileostomy surgery back in September, I ended back in the hospital within four days of my arrival. I was so sick at the time and did not even have the chance to find new doctors yet. I was overwhelmed with the Texas system along with having to relay all my advanced and extensive medical history to doctors I just met. Having to arrange for medical records from Wisconsin to be faxed here, and make dozens of phone calls with my surgeon in Wisconsin, only to find out there are doctors here unwilling to treat you because you were not in their insurance network. This all made for a very stressful and anxiety ridden 10 day hospital stay. Looking back, it was a strange blessing in disguise because I was forced to expedite everything in such a hurry that in a very short time upon arriving, everything was transferred here.
During the stay at the hospital, I was under the care of a GI doctor by the name of Dr. Rassa Shahidzadeh whom I immediately liked and trusted. During the 10 days, I spent long hours going over my health history and all the background of my illness with him, and and felt very comfortable with how he handled my treatment. When I was discharged from the hospital, I was told to follow-up with Dr. S, but unfortunately he was out of my insurance network and I was told to find another GI. I cannot describe the bitter disappointment. It was so frustrating to find a new doctor, go through all the background on my disease with him only to find that I could not see him post-hospital stay. It was a big letdown to say the least. So the search began to find a new doctor in my network.
When one door closes, another opens
It took some digging but I did find a doctor by the name of Dr. Balachandar. I set up an appointment to meet. Our meeting was very successful and I walked out of her office almost high with excitement and relief. She was wonderful to me; an excellent fit. And suddenly all the worry, all the anxiety and all the frustration led to this one moment and all I felt was an incredible weight lifted off my shoulders. Her demeanor and willingness to want to learn about my condition and history was inviting and open. Her gentle nature was very fitting with my personality, and she is good at explaining things. I ask a lot of questions, and I am grateful that she not only answers them all, but she gives thorough explanations and more than what I even asked for. She didn’t hurry me through the appointment like I have experienced in the past. Since I had to leave such great doctors behind in Wisconsin, it was a big relief to finally call Dr. Balachandar mine.
A lot has happened since I moved to Texas–some good and some not so good. But for the most part my health has improved considerably, and I am grateful that my better days are numbering more and more. Recently I had a small setback and ended up in the ER for a brief stay. My illness flared, and not only did it affect my tummy, it went into my joints. I had a follow-up with Dr. B this past Monday, and when I left her office it occurred to me while walking out to my car, that I had such a peaceful feeling. I always get so worked up about everything and somehow, someway this doctor calmed my fears. I was actually relaxed. Her interesting mix of modern medicine and Ayurveda healing practices are a welcome change to what I was used to before.
This is how it was it was meant to be
It is very difficult to leave trusted physicians who have walked along your path through so many trials of a chronic illness. It is harder yet to find another doctor willing to take on where those doctors left off, someone open to face the challenge of a complicated patient. I am grateful to have found such a doctor. It’s strange how things happen and when you step back you realize that maybe THIS ALL IS EXACTLY the way it was supposed to be, that every step on my path led me to this place, at this time of my life. These are the people I was supposed to meet. These are the people I am supposed to be with. I had to let go of some, but I gained others. It is kind of profound to think about how life leads you to people and places that are meant to come your way and you don’t even know it yet. It’s as if that invisible red thread has already sewn together the people you are meant to meet on this hidden life line, those who pass through your life temporarily and those who stay.
“An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break.” ~An ancient Chinese belief
~Nadia
Question: Have you established a good relationship with your doctor? Have you had to change doctors?
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.
