I’ve been writing the last few weeks about the various tests I’ve undergone to get to the bottom (haha) of my chronic pouchitis. This problem happens in patients with J-pouches (an internal reservoir) who have had their colons removed. My symptoms have been bleeding, increased frequency, and leaking at night. After two MRIs, an endoscopy, a pouchoscopy, and several blood tests, I now have a diagnosis: autoimmune pouchitis.
Keep fighting,
~Dennis
The results of my second pouchoscopy attempt, my first actual pouchoscopy. All in all, a pretty mild experience (and so much less frightening than a colonoscopy!).
Keep fighting,
~Dennis
Question: Have you had a pouchoscopy? How did your experience differ from mine? Respond to this post with your story!
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.
The Pakistan Flag
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.
Bio-Med Engineer Work Station
Baby Warmers
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.
Surgical Equipment Assessment
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!
Donated Hospital Beds
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.
The warehouse that holds all the supplies before they go out for shipment. AMAZING!
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.
World map marked with recent shipments
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.
Unpacking our donations
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.
Sandra and Me
Anyone wishing to donate unused new ostomy supplies or any medical supplies can read more. This is an ongoing donation drive. Email if you have any questions: Nadia@UCVlog.com.
“You must be the change you wish to see in the world.”
~Mahatma Gandhi
~Nadia
Last blog I wrote about my recent MRIs, tests I had undergone to get to the bottom of my pouchitis. Last Tuesday, I had the last of my tests: an endoscopy and pouchoscopy: the pouchoscopy to check the condition of my J-pouch; the endoscopy to check for Crohn’s. I haven’t talked to the doctor yet about the results, but I can tell you how the procedure went down.
Keep fighting,
~Dennis
Last Friday night, after everybody was home from work and school, the streets barren, the city covered with the darkness of night, I did something I’ve never done before: had an MRI. Now let me qualify: I’ve had MRIs before, but always during normal business hours. This MRI was scheduled for 7:30 p.m.
Not that I had anything planned for Friday night anyway, but it seemed strange to have an MRI so late. A good friend of mine joked about it through a text:
“What are you doing tonight?”
“I’ve got a hot date with an MRI. She is so attractive (if I wear metal). I lie in her curves. She knows me inside and out.”
Keep fighting,
~Dennis
I had a pouchoscopy recently, and this video describes the preparation I had to do beforehand. My next video will explain what the pouchoscopy was like and what the results were.
Keep fighting,
~Dennis
Question: For those who have had pouchoscopies, what kind of preparation did you have to do beforehand? Share by responding to this post! It’s easy! You don’t need an account or email address or anything.
Last November my United Colon Vlog co-host Nadia participated in a unique 5K/obstacle course called The Survival Race. The race was grueling but very rewarding after dealing with so many surgeries and illnesses. She had so much fun she invited me to the next one, this April, so now I’m training and preparing myself for this physical challenge.
Keep fighting,
~Dennis
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
~Nadia
Listen to Ankit’s podcast interview here with SCD Lifestyle. He explains how the Specific Carbohydrate Diet helped him with his Crohn’s Disease.
~Nadia
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?
