Question: Are you experiencing or have you experienced an intolerance to dairy? Does removing dairy from your diet help your IBD?
Question: Are you experiencing or have you experienced an intolerance to dairy? Does removing dairy from your diet help your IBD?
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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
Besides the obvious difference–temporary being for short term, and permanent being forever–this video covers the difference between the type of surgery each of these are, as well as, the reasons why a patient may need temporary ileostomy surgery or permanent ileostomy surgery.
In some cases a patient may undergo temporary ileostomy surgery only to later have to undergo permanent ileostomy surgery–as in my case. Despite having two temporary ileostomies, I now live with a permanent ileostomy. In this video I talk about both.
“My life is my message.” ~Ghandi
Recently we were contacted by WestGlen Broadcast Public Relations as part of a nationwide campaign to spread awareness in the inflammatory bowel disease community about Ally’s Law (known as the Restroom Access Act). Ally Bain and her gastroenterologist Dr. David Rubin offered us an exclusive video interview to spread awareness about this law. This was a phone interview with Dennis and I because we were all in different locations.
David Rubin is an associate professor of medicine, co-director of the Inflammatory Bowel Disease Center, and director of the Gastroenterology, Hepatology, and Nutrition fellowship program at the University of Chicago (UC).
Ally Bain was diagnosed with Crohn’s disease at age 11 and at age 14, Ally experienced a Crohn’s flare up in a department store and had an accident because she was denied use of the employee-only restroom. Since then, Ally has dedicated herself to raising awareness about Crohn’s disease and the rights of people living with the condition by creating “Ally’s Law.”
There are many resources where you can learn more about getting involved to help legislation pass this law in your state. Check out CrohnsAndMe.com as well as CCFA.org to learn more and find additional information.
We feel very honored to have been given this rare opportunity. We should all do our part and get involved in this movement because “everyone deserves restroom access.”
“Awareness is empowering.” ~Rita Wilson
There is a quote: “it doesn’t matter how slowly you go as long as you do not stop”…sage words from my daddy on the day I ran my first 5K. Not just any 5K, but a 5K with a 14 obstacle course and a mud pit to run through. Yes, a grueling sequence of obstacles set along a 5K path that I decided to challenge myself to do, while I was in recovery from my ostomy surgery back in September.
When I had surgery back in September, I decided at that time, that I needed to set goals to try to get my life back on track. I was a wreck. Emotional and physical mess. I had to try to find ways to restore myself back to “me,” so to speak. The old “me” never really ran a 5K, but whatever…ha! I wanted to try, and I think it helps too, toward building my self-esteem which was damaged quite a bit. My confidence needed some repair as well. Setting goals and achieving them seemed like the best plan to accomplish this.
The best laid plans
It starts out small, setting goals to walk 10 steps from the hospital bed to the door. Then down the hospital corridor or around the nurses’ station until I was finally able to walk out the door of the hospital to the car to go home. Small victories. When I felt that my recovery was on par, I decided that I would start setting goals further out, ones to work toward. The idea of a 5K run came to mind. Upon researching, I found the Survival Race in Texas being held in December – exactly 3 months post-surgery. My first thought, “where do I sign up?” I figured 3 months would be an acceptable amount of time for recovery.
I bought a pedometer shortly after and started tracking how much walking distance I could put on in a day. Later on, I started shopping for an elliptical machine. Then, I began stretching and trying to condition myself to some level of fitness in order to get through this. I had a few setbacks along the way that started to concern me. I kept getting ill with so many infections, flu, colds, I had an abdominal abscess, and I kept having setbacks. I was worried that I would not be well enough to achieve this goal. But harder yet, only a few short weeks before the challenge, I was injured in a car accident. I was about to give up on the idea of doing this 5K. My body hurt so much, and I couldn’t imagine trying to go through this and make it to the finish line. I began to think that this was too soon after surgery, then having so many setbacks; I should probably bail out and quit.
But slowly, I began to improve. I started walking a course outside my house and kept going until I reached the 5K mark. I would jam to my tunes, and the time flew by. Then, I started to jog and my endurance built up and I felt confident that I could do this. I was just going into it thinking all I have to do is make it to the finish line. Don’t worry about the time, just finish. JUST CROSS THAT FINISH LINE!!
The night before the race I was so nervous; I didn’t sleep well. I kept thinking about the day ahead and worrying about the obstacles; I researched all 14 and pinpointed the ones that I knew I could easily do and the ones that would be a bigger challenge for me. I kept thinking all along the way how this race is a metaphor for my life. There are all these obstacles, all these challenges, and I have to figure out how to navigate through them. I am not fortunate enough in life however, to know in advance what obstacles are ahead, but I think you get what I mean.
In this particular event there were tires to run through, a mucky river knee deep, muddy hills to climb, walls to leap, crawling under barbed wire through a pond, crawling through wet and muddy tunnels, climbing over wooden and metal structures, a rope wall I had to get over, a pit of paint balls I had to go through on my tummy, barrels to jump over, and a fire pit to jump across. Many times along the way I thought I wasn’t going to make it. I hurt myself, got afraid that I couldn’t do something, or that I would fall from the top of the rope wall—I sat at the top of the wall contemplating my descent. I got tired, cold, my asthma was making it a challenge to breathe, but at each challenge, I faced it, did it, and overcame it until finally, I came to the mud pit–the most difficult challenge of the entire course. It was a lake bed of pure mud that was waist deep. It felt and smelled like poo-(haha one must admit this really was the perfect metaphor for IBD!)
The mud pit was the hardest to overcome. Here, I struggled the most, I didn’t think I could get through, I lost my shoes and went through it with nothing to protect me, I got stuck and could not move, it was the part that slowed me down the most, and for a split second I stopped, looked up, and thought to myself, “I’m done-I can’t do this anymore.” This was the perfect analogy for fighting IBD. Still, I kept on going, and once I was able to make it out, I was still carrying the weight of 20lbs of mud on me through the rest of the course. Kind of like, how making it past the biggest hurdles, one still carries along residual weight of this illness. It doesn’t completely go away–sad but true. I have an ostomy appliance attached to my abdomen as proof and scars that will never heal.
Champion for a day
Finally after a little over an hour, covered in mud, blood running down my hand, and bruises on my body, I crossed the Finish line. I was never as physically thrilled to finish something in my life as I was to finish this. I.DID.IT…ME! It was my glorious, feel good, moment. I sank to my knees to thank God for carrying me to the finish line.
This race was tough, but then again, life is tough. Some of us learn this the hard way, but this challenge taught me something about life and about myself. I believe that no matter how hard something is, you eventually get through it. Unlike this race that ended in an hour, so many challenges in the path we walk through IBD take years to overcome if at all, but we celebrate small victories, good days, and overcoming the challenges. Sometimes we get to the end of a struggle and feel victorious. I also learned that even if I am afraid of the unknown or afraid of the challenge of what I am facing, if I have enough faith in myself to believe I can make it, I can, and most of all, I learned to not give up. I never gave up-I never quit. Even if it was only for a moment or a day that I could feel high on life for crossing that finish-line, to me, that moment was priceless. It took a long time to capture that feeling-I got to have it, and I earned it.
“Satisfaction lies in the effort, not in the attainment. Full effort is full victory.” ~Mahatma Gandhi