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
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?
Our friend Iris recently had her two year follow-up after her J-pouch surgery, and had her second pouchoscopy. For those of you who are unfamiliar, a pouchoscopy is basically like a colonoscopy, but for those of us who have J-pouches instead of colons, it takes almost no time at all since the J-pouch is rather small.
Iris had no issues this time around, so that was great. She filmed the pouchoscopy as it was happening: for those of you who are more interested in the biological part of medicine, you’ll enjoy the middle of this video. Be forewarned: there is some graphic material! She didn’t have to do any prep before the pouchoscopy, so her pouch has some stool in it.
If this video ever gets flagged on YouTube for graphic content, create a YouTube account verifying you are over 18 and sign-in to watch the video.
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
Recently I told you how my J-pouch was doing after three years, now for another perspective. In this video, Sara gives her thoughts on living with a J-pouch for three years. She brings up some issues that I haven’t talked about as much in my videos, as she’s had a slightly different experience than me.
If you have any questions for Sara, please visit her YouTube channel. She is not an official contributor to this blog so if you leave questions for her here they won’t be answered.
The video you’ve all been waiting for…the three year J-pouch update video! I don’t really have a lot of new information in this video: this last year was pretty mild. But I guess no concerns is good news in and of itself.
To get a sense of how this year compared with previous years, check out these previous update videos:
“Eating is not merely a material pleasure. Eating well gives a spectacular joy to life and contributes immensely to goodwill and happy companionship. It is of great importance to the morale.” ~Elsa Schiaparelli
The following videos describe how the da Vinci robotic system is used in colorectal surgery: one video discusses surgery for ulcerative colitis, the other for colon cancer.
The da Vinci system has been around for over a decade now, and roughly 1,000 of these units have been sold worldwide. I, however, have never talked to anybody (as far as I know) who has had robot-assisted surgery before, so I can’t speak to how they work in practice. One misconception about this surgery is that the robot does the surgery itself: not true. The robot can’t perform any functions on its own. Rather, the system is a highly advanced extension of the surgeon’s hands.
Proponents of the da Vinci system claim it yields better results, faster recovery time, and smaller incisions. Opponents think that the high cost of the surgery, and the steep learning curve for surgeons, might not make the surgery worth it, especially compared to laparoscopic surgery, which is also an option.
