Posts Tagged ‘Ostomy’
The invisible red thread
February 1, 2012There 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?
Stoma Guards by Stomaplex.com
January 27, 2012In these videos, Maggie models the Active-Life Stoma Guard ($148) and the Pure-Comfort Stoma Guard ($184), both sold by Stomaplex.com. In full disclosure, Maggie was paid to create these videos, and Nadia and I haven’t tried these products ourselves.
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.
Keep fighting,
~Dennis
The Equalizer by Stomaplex.com
January 23, 2012In 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.
Keep fighting,
~Dennis
Keeping stress levels balanced when dealing with IBD
January 22, 2012Here 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
~Nadia
Cookin’ With Nadia: Gluten free chicken tenders
January 11, 2012Gluten Free Chicken Tenders
Chicken Breast
2 Eggs
2 Tbsp Poultry Seasoning
2 Tbsp Parmesan Cheese
4 Cups Gluten Free Rice Chex (or Gluten Free Corn Flakes)
Salt/Pepper
I demonstrate how to make this delicious meal.
“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
~Nadia
What’s the difference? Temporary vs. permanent ileostomy
January 8, 2012Besides 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
~Nadia
Exclusive interview with Ally Bain, creator of Ally’s Law, and her gastroenterologist Dr. Rubin
December 19, 2011Recently 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
~Nadia
Possible tests after bowel surgery
December 16, 2011In this video Nadia and I discuss possible tests the doctor might perform if you have continuing problems after bowel surgery. Nadia and I have had some of these tests performed ourselves. This video is just for your information: hopefully surgery works out well for you and you don’t have to undergo any series tests again.
Stick around for the end of the video for a rare bit of humor.
Keep fighting,
~Dennis
