Yesterday I talked about the tissue bank donation of my J-Pouch that they will collect after surgery. In preparation for surgery, one must undergo pre-surgery testing. In pre-surgery testing, there are steps that have to be done prior to any surgery. In most cases you will meet with a nurse, a pharmacist, and a pre-surgery physician to cover all aspects of your surgery. You will also have to do blood work and additional scans or tests as noted by your doctor.
This is done in preparation for any upcoming procedure to give the best result as a patient heads into their surgery. This testing leads the patient to surgery in the best possible way so that the surgeon and his staff are best prepared for your surgery. It also helps you know what to expect as much as possible. In my case, having gone through these steps, put some of my anxieties and worries at ease.
“Failing to prepare is preparing to fail.” ~Benjamin Franklin
Prior to my surgery, I received a phone call from the Tissue Bank. I was asked to donate my J-pouch for research. The research helps in evaluation, diagnosis, or treatment of future patients. Once the surgeon removes my J-pouch, he will be doing biopsies, and instead of discarding the remaining tissue, it will be sent to the tissue bank, where it will be stored in a facility to be accessed at any time for research. This research does not benefit me directly but will be an overall benefit to any patients suffering from this disease.
Researchers may learn from using my specimen but none of my personal information will be attached to the organ. More specifically, it will have a vague description, such as 20-year-old female with Crohn’s disease. The risks are very low and the hospital is required by law to protect my health information.
I hope that because I have to go through all this, this donation of my body part will benefit other people. With any luck, something good can come out of this mess. So I will send off my J-pouch with a small prayer that it brings some answers to others.
“Research is creating new knowledge.” ~Neil Armstrong
An ostomy should not hold you back from anything. Your life does not have to change after ostomy surgery. If you enjoy certain activities before having an ostomy, there is no reason you cannot enjoy them now that you have one. I demonstrate in this video a couple of tips on riding a bicycle. It’s not really different other than a few minor adjustments. Make sure the most important thing is that an ostomy can cause dehydration very quickly, so when participating in any physical activity, always keep hydrated. Also, an important tip is to keep your ostomy bag close to your body by the type of clothing or wrap you wear. This will avoid a lot of shifting with your ostomy bag, keeping everything confined close to the body. Lastly, when you perspire, it can cause sweat to make the flange wet and detach from the skin. Just dry the area and try to stick it back on if it happens by reinforcing it with some tape, or if necessary, change your appliance.
“If you worried about falling off the bike, you’d never get on.” ~Lance Armstrong
Anybody planning a party and having to keep in mind tummy friendly foods might have difficulty finding a good variety and tasty snacks. I introduce a few fun snack items that are sure to be a hit at a party.
As a graduate student focusing on health communication research, I understand the value of participating in research studies to advance scientific knowledge. But as a patient with inflammatory bowel disease, my interest in research is also personal.
As we know, inflammatory bowel disease has no cure and no known prevention methods. And for some of us, treatment after treatment option has failed us, leaving us with surgery: an imperfect treatment option.
Everybody with inflammatory bowel disease has a stake in this. We all stand to benefit from medical advances from research. While great strides have been made in IBD research in the past decade, much more work remains to be done.
We share tips with you to make changing your ostomy bag a bit easier! Please respond to this video with your own suggestions and tips on how others can make this process go a little smoother!
“I always pass on good advice. It is the only thing to do with it. It is never of any use to oneself.” ~Oscar Wilde
Just recently I flew for the first time with my ostomy, and I wanted to share my experiences and everything I did at the airport.
I have flown in an airplane before, just not with an ostomy. It’s a little different when you are flying with a medical device.
My video is my experience flying from Dallas Fort Worth airport to Milwaukee Wisconsin and back again. Going through security with my ostomy was handled differently in both airports, as I’m sure it would be handled differently at any airport in the world. It doesn’t have to cause you undue stress or nervousness. Flying is very easy and comfortable, and a good TSA agent is very discreet, so enjoy the video and enjoy your next flight!
“He who would learn to fly one day must first learn to stand and walk and run and climb and dance; one cannot fly into flying.” ~Friedrich Nietzsche
Recipe:
1-16 oz. can of Garbanzo beans/chick peas
3-5 Tablespoons-Lemon Juice
2 cloves crushed garlic
1/2 teaspoon-Sea Salt
1 1/2 Tablespoon Tahini
2 Tablespoon-Olive Oil
Reserve 1/4 cup of chick pea liquid and drain the rest. Add chickpeas, lemon juice, garlic, tahini, and sea salt all to blender. Blend for a total of 3-5 minutes on puree–check after first 30 seconds and add the liquid reserved from chick peas, then again blend for 1 minute. Check. Continue blending until it forms a thick paste.
Pour contents into serving bowl and make well in the middle. Add 1 tablespoon of the oil, an mix. Repeat.
Serve with crackers, vegetables, pita bread(contains gluten), or chips.
Enjoy!!
DISCLAIMER: DO NOT EAT THESE FOODS IF YOU HAVE AN ALLERGY OR THEY DO NOT AGREE WITH YOUR SYSTEM!!!
I am starting a new series on living with an ostomy. From practical every day things to crazy outrageous and daring things! I’m going to try to demonstrate all! Enjoy this series.
If you have any questions on how to do certain things, ask me and I will make a video!!
“We all have the extraordinary coded within us, waiting to be released.” ~Jean Houston
~Nadia
Question: Do you have certain challenges you wish to share, that you face when dealing with IBD, having an ostomy, or living with a Jpouch?
We suspended the donation for a while as we moved, but now we are all settled and have a new address for you to send your supplies to!
Don’t throw your supplies away, DONATE THEM! If you have changed products, had a temporary ostomy, or just have extras, please send them to us and we will send them to countries that are in need of them!
The address to send your supplies to is:
Nadia Fuad Deane
6604 Jupiter Road
Plano, TX 75074
“I have found that among its other benefits, giving liberates the soul of the giver.” ~Maya Angelou
~Nadia
Question: Have you switched or changed your ostomy products in the duration that you have had your ostomy? What were your experiences?
