The Oley Foundation was there when I first went on TPN 35 years ago. I felt all alone until finding Oley. They helped me navigate insurance coverage and now they do very informative webinars, mini conferences, and annual conferences. They were held in person prior to COVID and I’m sure will be available again soon. They have very good info that is free on their great website. There is a group of Oley Ambassadors available to reach out. Just reading their website and newsletter will inspire newbies facing this life sustaining nutrition and help them with travel, and being your own best advocate, empowering you with information and encouragement.
Without Oley Foundation I would have not had enough formula for my enteral feedings. I was able to find a lady that lived close enough to me that I could drive and meet her to get almost 3 cases of formula. My insurance company wouldn't pay for my formula anymore once I lost my secondary insurance. God bless this company for helping the needy patients out there!
The Oley Foundation has been one of the greatest assets in my feeding tube and TPN journey. When I first got my feeding tube they put it in and sent me home the same day without telling me how to use it or what is normal/not normal. I found the Oley Foundation online and they had lots of useful information on feeding tubes that made my transition way easier. When I started on TPN I knew exactly where to look for help. On top of their website, they have conferences and mini conferences where you can go to find out everything you need to know about being on a feeding tube or TPN. I am so grateful for their help!
I found Oley when I first when on total parenteral nutrition ( tpn). I didn't expect much beyond getting a little information. Instead, I found a whole new family that completely understands what I am going through ... the little glitches and the big issues like sepsis. I suggest Oley to anyone I meet who is on alternative feeding, and my gi now tells all his tube feeding patients about the site.
I learned of the Oley Foundation from the website of one of the most prestigious nutrition organizations in the US, The Oley Foundation deserves the highest praise for its very quick response to inquiries as well as depth of information it provides.
The Oley Foundation is an amazing support to consumers dependent on all forms of artificial nutrition. I discovered them when my daughter was a newborn. Listening to the doctors, everything sounded so hopeless, but once we got connected with Oley, that 'less' turned into 'full'! We found through their wonderful means of support AND patient education, that our life was LIVEABLE and DOABLE! Attending conferences has helped our (now 19 year old) daughter connect with others just like her, and has helped her through situations that her normal peer group just cannot understand.
My daughter was born with a very rare disability - she can't swallow food or liquids. She is "normal" in most other ways, but will most likely have a g-tube for the entirety of her life. She has been 100% tube fed for over 2 years now. We have gone from formula diet to a pureed food diet. She is thriving. I love receiving the information from the Oley Foundation. They help us find people to use extra supplies, and we have been the recipient of needed supplies. They have a wealth of knowledge, and are eager to help.
My husband had a feeding tube for almost two years. Oley was famtastic in providing support and information. They have an online Forum where you can connect with others using feeding tubes and TPN, with questions and answers, comments, discussions, and all kinds of helpful info. There's nothing like being in touch with people in the same boat, and you learn so much from everyone's experience. Oley also offers lots of educational materials and has an annual conference. A wonderful, wonderful resource.
My husband has Stage 3 squamous cell cancer of the tongue and neck. Surgery removed his tongue. lymph nodes and teeth. He has a trach and PEG tube and is on enteral feedings. The insurance company does not cover enteral feedings. It costs $500 a month to give him 100% nutrition and maintain his weight. The OLEY foundation has been a huge blessing to us. We use their equipment exchange program and are very happy to have found great people who understand what we are going through. We also use their forum site and have had answers to our questions. What a great group of volunteers who have helped u in our time of need. Hopefully one day we can give back to those who gave to us. GOD BLESS the OLEY team.
Duvie is my better-half's brother who ruptured a hole in his esophagus in Oct. of 2009.
He struggled with the medical term, NPO which means "Nothing By Mouth."
It's beyond belief for most of us a first to even believe it to be possible for anyone to survive without anything at all going into the mouth. I've never been on a diet, but I've known people that have and they struggle with their foods which they chose to give up. What if you could not have anything to eat, drink, or taste. After 3 years of dealing with Duvie's condition and Drs giving up on him, I turned to the internet.
I discovered Oley Foundation Support Community-Inspire. I was so amazed with patients and caregivers being able to share their experiences to ask questions with others coming to their rescue to help give the answers needed. Oley members have given me an education through their personal experiences that I would not have received otherwise. Friendships that develop among Oley's members feel very real even though we have not met. I have been with Oley for less than a year and I have learned so much from these marvelous members. Being with Oley as well as many other support groups within Inspire.com has become my favorite pastime. I speak with members more often here than my own family members. When going to hospitals, Dr's appts, ball games, I wear my Oley shirt with pride and talk with people everywhere I go. I LOVE Oley members and their quick responses to help others in need.
I have a J tube as my primary method of getting nutrition. I've had the tube for a year and a half. I have gastroparesis and was not able to eat enough to sustain life. I had a gastrectomy earlier this year and have connected with a few others through the Oley support forum that have had the same surgery. The Oley Foundation is an amazing site. Here I've found a support community and education. I've learned how to better manage my tube and it's so comforting to talk to others in similar situations. I've learned more from the Oley Foundation than I did from my GI. I'm an RN so knew how to use a feeding tube and care for the ostomy. But I've still learned from this site things I didn't learn in nursing school or in practice. I would feel very alone if it weren't for this site.
I've had a feeding tube since 2005. Having to adjust to a life in where the term "quality of life" applies, the Oley Foundation provides much need education and support. I too especially like the newsletters and forum, which provide so much practical information. Thank you Oley and all the staff!
I started a tube feeding journey in early 2013. The Oley foundation has been an amazing resource of information, and the forum of fellow "tubies" has provided so much support. I am also a nurse practitioner, but there is nothing in my own training or nursing experience that could have prepared me to actually live with a tube. The Oley Foundation is a repository of how to really live day to day life and thrive successfully with enteral feeding. That education comes from other people like me, sharing and supporting each other. Thanks, Oley foundation!
For more than six years, I've been tube-fed; without this medical miracle, I'd be dead.
At age 91, I influence legistlators by phone calls and emails, keep in touch with long-time
friends, read up on subjects never had time for when working and raising a family. I catch
radio and TV programs (Coast-to-Coast, 60 Minutes, CNN, PBS, TCM), exercise, and manage
my meds and HPN feeding by pump l3 hours at night while sleeping. A busy day! Oley Forum
by Inspire gives me a chance to find out what others are facing; often I learn and help from
my experience.
Review from Guidestar
Because kids requiring all their nutrition via IV is so rare, most of our sons doctors were skeptical about his ability to live, let alone life a life of quality. We went to our 1st Oley conference when he was barely 2 years old, frightened, exhausted and losing hope. Because the conference is free to consumers, and supported by the industry serving us, our only costs were transportation and lodging, further minimizing the burden on the families. But the best part was seeing the other kids, the older kids, who were in their element, cruising around with their Oley-friends, infusing from their black backpacks, casually slung across one shoulder. I cried, helpless with the sense of hope and joy and energy, just from the sight of them.
The Oley Foundation is an extraordinary organization with a dual focus on education and support. Oley is a unique nonprofit organization, in that programs are centered around a therapy (enteral or parenteral nutrition support), rather than a specific medical condition, so that members can come together from an otherwise diverse community to discuss their shared treatment method. There is a strong member-to-member network that you can connect with at any time through the Oley offices, where you will always find someone either in your area, or even located across the country, who is willing to share their experiences and provide support if you need to talk about your own.
Oley is an outreach platform which very effectively utilizes conferences, educational videos and other materials to facilitate communication between patients and physicians outside of the hospital or exam room setting. This not only increases the accessibility of critical health-related information, but also bridges a gap that can sometimes exist between patients and clinicians, while fostering a sense of community between them.
I had to have a feeding tube placed in 2009. It was a traumatic experience, but Oley normalized the experience. They provide restaurant cards so I don't have to explain to waiters why I am choosing from the kid's menu. They also have the best travel advice for people with feeding tubes and IV nutrition. I used the website to help educate myself on the different types of central lines when it was time for regular IV fluids. Their conferences, though I have not been well enough to go myself, has made huge differences for my friends. It has been a great resource for myself and family.
I have a long history of gastrointestinal issues, and too many surgeries and hospitalizations to go into here. In 2006 I had a non-reversible ileostomy which it took me a long time to accept. If only I had found Oley then, I think that my journey to acceptance of my ostomy would have been much shorter. I've been on alternative feeding (either tube or TPN) for over three years, and have gotten a lot of information from the site. The accumulated experiences of the members is invaluable; it is virtually impossible to present a problem or question that someone hasn't had experience with. While it doesn't pretend to substitute for a professional's advice, the site provides advice, support, and encouragement to all its members. The Oley friends monitor the site and take down offensive posts, making us feel safe in expressing our feelings without fear of being attacked. Plus, the process of offering support to others makes sense out of the experiences that I've been through -- it gives a meaning to my suffering to be able to help others who find themselves in the same situation.