This is an update video where I share the complications I have been dealing with since my permanent ileostomy surgery.
“We must accept finite disappointment, but never lose infinite hope.” ~Martin Luther King, Jr.
This is an update video where I share the complications I have been dealing with since my permanent ileostomy surgery.
“We must accept finite disappointment, but never lose infinite hope.” ~Martin Luther King, Jr.
Ostomy Nurse Harriet Pilert Presented with Annual Great Comebacks®
Nurse Award at WOCN 44th Annual Conference
Award recognizes exceptional care and dedication to ostomy patients
CHARLOTTE, NC, June 10, 2012 – The Great Comebacks® Program today presented Harriet Pilert, RN, MS, COCN with the WOC Nurse Great Comebacks® Award at the opening ceremony of the Wound, Ostomy and Continence Nurses (WOCN®) Society™ 44th Annual Conference in Charlotte, NC. The Great Comebacks® Program annually honors outstanding individuals, including the specialist WOC nurses who inspire their patients to live life to the fullest after ostomy surgery.
Pilert is an ostomy and continence nurse at Mercy Medical Center in Baltimore, MD. The award recognizes Pilert for the exceptional care she has provided to Jenn Stahl, the 2011 Great Comebacks® East Region Award recipient, as well as many other patients and their families.
Stahl suffered with painful bouts of Crohn’s disease for 22 years and once said she “would rather die” than have ostomy surgery. In 2009 Stahl was told she no longer had a choice and was introduced to Pilert to help her through the surgery she had avoided for decades.
“I had a very difficult time when my doctor said I had to have ostomy surgery. Harriet came in and told me it was OK to cry with her and that we would go on from there when I was ready. She was so patient and understanding and her encouragement helped me to accept my new way of living and to focus on the benefits of ostomy surgery and better health,” said Ms. Stahl.
While in the hospital recovering, Pilert encouraged Stahl to put up a poster and fill it with all of the new things she would be able to do with her family that she hadn’t been able to do while she was sick. Now fully recovered, Stahl shares her story to provide encouragement to other patients of Pilert’s that need ostomy surgery.
“Harriet is a source of comfort for all of her patients and takes important steps to help them both mentally and physically adjust to living with an ostomy. Great Comebacks® is honored to recognize her great work and the remarkable thoughtfulness and commitment of all ostomy nurses,” said Rolf Benirschke, founder and chairman, Great Comebacks® Program.
The Great Comebacks® Program is sponsored by ConvaTec, a world-leading developer and marketer of innovative medical technologies for community and hospital care, in partnership with the Crohn’s & Colitis Foundation (CCFA), the United Ostomy Associations of America, Inc. (UOAA), the Wound, Ostomy and Continence Nurses (WOCN®) Society™ and the American Society of Colon and Rectal Surgeons (ASCRS).
“Harriet Pilert is steadfast in her dedication to go above and beyond in her efforts to serve her patients. We are so pleased that she has been recognized with this honor from Great Comebacks®. She is a wonderful role model for the nurses in our field and a gift to the patients she serves,” said Kathleen Lawrence, MSN, RN, CWOCN, president, WOCN® Society.
Pilert was previously recognized as the 2009 Nurse of the Year by the Mid-Atlantic region of the WOCN® Society.
About the Great Comebacks® Program
Now in its third decade, the Great Comebacks® Program raises awareness of quality of life issues for people with Crohn’s disease, ulcerative colitis, colorectal cancer and other diseases that can lead to ostomy surgery. The mission of Great Comebacks® is to provide information and inspiration to people facing the emotional and physical challenges of living with serious intestinal diseases and ostomy surgery. The program also aims to remove the stigma surrounding ostomy surgery and to educate patients, their families and friends, and the general public that ostomy surgery can be a second chance to fulfill dreams and lead a full and productive life with joy and passion. For more information, click here.
About Ostomy Surgery
An ostomy is an artificial opening in the abdomen to the intestines or urinary system to allow for the elimination of bodily wastes. More than 700,000 Americans of all ages are currently living with an ostomy. An ostomy procedure is essential to many patients affected by colorectal cancer, bladder cancer, Crohn’s disease, ulcerative colitis, birth defects, and other intestinal or urinary medical conditions.
ConvaTec is a leading developer and marketer of innovative medical technologies that have helped improve the lives of millions of people worldwide. With four key focus areas – Ostomy Care, Wound Therapeutics, Continence and Critical Care, and Infusion Devices – ConvaTec products support health care professionals from the hospital to the community health setting. For more information click here.
Great Comebacks and the Great Comebacks Logo are registered trademarks of ConvaTec Inc.
Some of you may be aware that Dennis and I are both recipients of the Ina Brudnick Award which is part of the Great Comebacks Award program. They recognized our work in the IBD community. If anyone is interested in applying, the deadline to apply for all the Great Comebacks awards is August 1. All of the info is located here.
“A hero is somebody who is selfless, who is generous in spirit, who just tries to give back as much as possible and help people. A hero to me is someone who saves people and who really deeply cares.” ~Debi Mazar
Thank you to Andrea from BERRY & COMPANY PUBLIC RELATIONS, LLC for forwarding this information to us.
An interesting talk given by Jonathan Eisen as he explains about microbes and the “teaming ecosystem of micro-organisms that cover us. Often times, it is a mis-communication of microbes in and on us that create an immune response.” His talk touches upon studies done in patients with Crohn’s disease. It’s worth the watch!
“Men love to wonder, and that is the seed of science.” ~Ralph Waldo Emerson
Question: Are you experiencing or have you experienced an intolerance to dairy? Does removing dairy from your diet help your IBD?
Created by: OnlineNursingPrograms.com
A special thank you to all the contributors that put the time into this statistical image. Please see the bottom of the photo for a list of all the sources.
Out of the four contenders, which toilet is the most viable option? The Dutch, the British, the Canadian, or the U.S? Why??
“To waste, to destroy, our natural resources, to skin and exhaust the land
instead of using it so as to increase its usefulness, will result in undermining in
the days of our children the very prosperity which we ought by right to hand
down to them amplified. . . ” ~Theodore Roosevelt
Have you ever felt that defining moment when you know you are in the right place at the right time? I know it doesn’t happen for me often, so when it does, I can recognize the feeling right to the core of my being. That feeling came to me when I went to Houston a few weeks back to deliver all the ostomy supply donations I had collected into the hands of Project C.U.R.E.
The past weeks have been very difficult for me–I lost my Grandma, and my daddy left immediately for Pakistan; my mom and I were in Texas alone to handle life here. Besides that, I have been undergoing more testing and had to undergo another abdominal cat scan (with barium) to see why I continue to have issues, and doctors have concluded that my disease has moved into my bones and joints–so this blog is long overdue, but there has been a lot of emotional upheaval preventing me from writing. However, I had made an appointment long back to make this delivery of our supplies so the course was set, and although the nearly 5 hour drive to Houston was going to be a long one, my mom and I decided rather than postpone the appointment, we would just follow through. I am so thankful we did.
On the road
The night before we left, I felt so tired and lazy, but a friend called me, and she had a donation to add. We planned to meet so I could pick-up these additional supplies. A large supply of dialysis supplies were added to our donation from a family who lost someone to kidney failure. For some reason, this donation impacted me so much. Maybe it was the generosity of the donor to think of us at this time, coupled with their loss, and the feeling of hurt that I am feeling in my own life. In any case, it was such an amazing donation.
We woke up early to head out to Houston, packed the back of the truck with all the boxes–full to capacity; we left before 6:30 a.m. to head to Project C.U.R.E. The drive was uneventful, quiet and contemplative. While we listened to music the entire way, we thought about what to expect when we arrived to the facility. What happened was completely unexpected. When we drove up, the very first thing I saw in the window is the flag of Pakistan. I don’t think there could have been a more prominent sign for me than that. I felt my Grandma smiling down on me. It was as if I was supposed to be there at that moment, at that time, doing exactly what I was doing. I know it may seem insignificant to some, but to me this was a sign, and suddenly my spirits were lifted.
Philanthropy in action
Upon entering we were quickly greeted by the director Sandra, and we instantly connected and felt very welcome as she took us on a tour of the facility. We walked through the entire warehouse as she told us the story behind Project C.U.R.E. and how they operate. The Houston site sends out three to four 40-foot containers of medical supplies per month. They are volunteer-driven, having approximately 20 regular volunteers plus a variety of groups that come in to help each month bringing their volunteer number up to 200. They have bio-med engineers who aid in examining the donated electric machine equipment–ultrasounds, baby warmers, x-rays, etc.–to make sure all items are in good working order before being sent abroad. If they are not working, the item is disassembled; good parts are saved and used for non-working items so they can reassemble to make them viable for use. Nothing is wasted here. It was an awesome thing to see the amount of work and effort that is put into keeping things running in such an organized fashion. Each person or team does its part.
Next, she showed us an area of surgical equipment that was organized into categories and bins. Each month the Association of Operating Room Nurses comes in to assess the surgical supplies and organize them. Each item donated has to go through assessment. There are different electrical requirements as well and when a country requests items, the facility has to determine if the item can even be used based on the ability to run the machinery in that particular country.
From our hands into theirs
When a container is shipped, the items arrive to the country with no additional taxes or tariffs tacked on to it. The items get into the hands of those that need them. Project C.U.R.E. works with the health minister of the recipient country to ensure supplies arrive at the hospital or clinic in need. An average container can value up to $400,000.
The items are carefully and methodically packed to ensure safe shipping. Each box is labeled with specific inventory. Each step of this process makes the operation run smooth. Boxes and supplies are loaded onto the container with the help of volunteers. Hospital beds, when needed, are also sent. When a bed arrives as a donation, if the mattress is soiled and unusable, the padding can still be used for packing material. The resourcefulness of this facility was incredible!
Project C.U.R.E. also organizes special requests for countries by working with the proper contacts to ensure that items are able to be sent directly to them. For example, I was contacted by a hospital in Egypt: by informing Project C.U.R.E. and providing them the contact information, they would be able to facilitate a shipment of the requested supplies to the hospital in need. That was nice to know since I often do receive requests asking for our ostomy supplies to be sent abroad to specific countries in dire need.
I asked Sandra about ostomy supplies specifically since that is our donation drive focus, and she responded that it is a common request for ostomy supplies from developing countries. I was thankful that our supplies will go to helping other ostomates across the globe. Supplies are sent to areas ravaged by war, field hospitals in remote tribal areas, developing nations, and areas hit by natural disasters. The hospitals and clinics set up to aid the people are in extreme need for medical supplies and are able to use that which we no longer or can’t use here in US. At the time of my trip, there was a container leaving for Vietnam, and plans for three containers to be shipped to Indonesia, Swaziland, and Nigeria.
Because of you
After an hour-long tour and then unloading our supplies, I left Project C.U.R. E. with a little spring in my step and had such a good feeling that we together are doing something to make a difference. I want to thank everyone who makes this possible.
To each of you that sent in a donation, there are no words to describe your kindness and generosity. A simple thank you would not suffice. For each of us that is taking a difficult situation and turning it into something positive, it is a testimony to your strength and ability to overcome this obstacle life has put in your path. Everyone that has made this gesture of goodness, please know that we are, and will forever be, grateful. Your donation will be put to good use and someone out there in this world is having an easier time on their own journey because you thought to do this. And a special thank you goes out to Project C.U.R.E and Sandra for working hand in hand with us to help get our supplies to those in need. United we stand.
“You must be the change you wish to see in the world.”
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!
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.
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
Listen to Ankit’s podcast interview here with SCD Lifestyle. He explains how the Specific Carbohydrate Diet helped him with his Crohn’s Disease.
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
Question: Have you established a good relationship with your doctor? Have you had to change doctors?
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