Such an amazing video! So much info about HPN/TPN

After feeding enfit should be close or open

Important info thanks for uploading!

How to avoid hunger with hpn

I was diagnosed in 1974 with Crohn’s disease, since I was 14 I have had 27 abdominal operations, I have been on TPN at home since 2010, I was diagnosed in 2008 with intestinal failure I now have TPN 4 days per week for 12 hours at a time, along with other medications given via a Brovic or Hickman central line. At 64 now it’s been difficult as I set up all my own Infusions, I live in The UK in Essex and attend St Marks intestinal failure unit at the Central Middlesex Hospital in London. I have had excellent care here and also for the past 2 years I am having infusions every 6-8 weeks to help control the Crohn’s attacks. Thank you for this podcast as I found it very informative, I also do what I can to help others in my situation and try to be here for them if they ever need too talk.

Thank you so much. I have a friend with Gastroparesis. She has suffered so much I can't even begin to describe it. They removed her colon, her gallbladder, her appendix, she has a stimulator, she's on a bunch of different drugs, she's allergic to a whole bunch of others, and she's in and out of the ER vomiting green bile. She has diarrhea now severely and is dehydrated and has low potassium. Doctors have virtually given up on her and told her she's too complicated. She's now on hospice.

Thank u

Why would you limit meat?

If you have short bowel syndrome do not listen to this lady and eat carnivore!

How can you say with a straight face that that soybean oil is an essential fat and say animal fat and butter are not is ridiculous. Shame shame

I really appreciate this presentation

I have a client today that will benefit from this, thank you so much for these resources.

Good morning, I'm currently researching information about short bowel syndrome and came across your video. A dear friend's 3 months old baby girl in the NICU in San Antonio just had their short intestines removed, leaving only 7 inches. I want to assist, but I feel somewhat helpless. Could this tiny baby be a candidate for a transplant once more stable? If so, who should the family reach out to? Please let me know if you can provide guidance or direct the parents to the right team of professionals.

The reality is that the average person is not equipped experientially, to navigate through the complex web of procedures, rules, insurance nomenclature, codes, and multitudes of different agency call centers to simply ask for the coverage for the liquid ‘food’ they must have because they are required to eat via a feeding tube for the rest of their life. It is frustrating beyond belief and extremely difficult especially when your doctors are over booked and do not have the time or inclination to assist in working through the issues of difficulty in getting the insurance companies or agencies to pay for nutritional services. We need to have help from professionals in the field because it is virtually impossible to do it alone for a lay person dealing with a lot just having this condition. If there are any such services to reference links to their websites or email addresses. Thank you!

How was the parental support(s) measured? I am curious to know.

Don’t eat seed oils.

I love the Oley Foundation!!

Tooo many um’s 😂

Great talk with lots of info anyone on TPN or putting lines in for people going on TPN long term. 34:05 How long do sutures stay in.

Wonderful presentation thank you so much. I am a veterinarian and I noticed right away more than half of human medicine is myth. We are evidence based. I've literally done more for a stray kitten than some doctors wanted to do for my son. I don't think anything will change until mothers unite and force it to. And change is desperately needed. How many people have died for lack of 10 dollars more for a proper catheter? Corporate greed and government are literally killing our children. My son's neurosurgeon became administration now makes more than a million dollars a year. Surely 10 dollars is available for patients.

Thanks for the lnfo. Was easy to grasp.

Gastropathic pain can be very debilitating. It took six months and many doctors before they finally did upper endoscopy that came from lab as chemical gastropathy. Months later, still with pain. :( Going to another GI to get treated there... but there are months of wait time to see specialists... :(

great!!!

I enjoyed the talk about advocating for yourself. I am advocating every single day but I have doctors who don’t feel that I know much about my feeding tube and having the surgery that I desperately need, which is a colectomy and a permanent ileostomy. I feel like I’m living in a box built by my PCP. You have taught me so much. Thank you all!

You are one smart and loving mama! I love you too.

For Lucas: In 2010 Dr Vienna did my mesenteric vein resection with Dr Henry A Pitt at Indiana University (cardiology dept too trying to use vein grants from my groin). Dr Mangus was there around that time had about half the hospital in the surgical room they told me since it was experimental. Vienna was there not too long before my surgery to develop their transplant program. My small bowel was dying off due to a tumor that kept comig back on my mesenteric vein. I was in a 6 day medically induced coma with about 3 surgeries while in that coma. They ended up reconnecting everything after my vein grafts failed. Your surgery sounds a lot like mine. I have only my duodenum and most of my colon left. If I had to go through that to save someone else it makes it all worth it. I also thought transplant right away too. It will be 13 years this September on TPN and occasionally think of it but will know if the time is right. I finished grad school shortly after that surgey taking off one semester. I've also only had one line infection in over 12 years. Glad you are doing well!

I got sent home on enteral feedings(gj tube) had no training on anything with 3 days of feedings.I have ptsd from waking up during surgery of having my feeding tube placed.

Can any advanced method is there without immunosuppresents such as training our body immune system to accept the donated organ...pls ànyone tell

Xxxxxxx

powerful. thank you for sharing.

nice

How I can donate supplies?

I fight wit sbs and absorbing nutrients i live in fl what hospital should i go to for a transplant

Loved this presentation Dr Iyer. I’m not a doctor and I was able to understand and follow it all. Thank you! I share your excitement and hope for future developments

Great Job and thank you

I read where it can be common in mitochondrial disease.

hola doctor soy de marruecos mi estado es muy dificil tengo una enfermedad rara tengo paralisis intestinal visito a mas de un medico y no encontre solucion

Thank you, it was very helpful. Thank you.

nice video

I would first like to say this is a very good source for those of us who are trying to go about the blenderized diet as a team with our dietician and GI to give our child the best care possible. Thank you for that. Next, there are indeed some children that are on a diet to treat a medical condition, for example, the ketogenic diet for seizures. There are families I know that seem to be pretty successful in keeping the ratio the child (my experience is in pediatric as my daughter is the one with a feeding tube) needs to have success with the blenderized diet and keeping the seizures at bay. My daughter phased off of the keto diet before we explored the blenderized diet so I don't have personal experience with it though. Third, to help with burnout, please don't make us parents count every single macro and micro for every single day if we want our child to have variety. In mine and my husband's experience, our GI and dietician were supportive of us transitioning to a fully blenderized real food diet, but we had to keep to a percentage/gram amount of protein, carbs, and fat. Then had to meet certain macro expectations and were only approved to do a few recipes they had to approve. I know not all of us parents do tons of research and are knowledgeable about the diet, but it was exhausting. No typical child's parents are going to worry about ANY of that. They're going to worry about portions...IF that! It's most likely chicken nuggets and mac and cheese, and a multivitamin if you're lucky. So, what the difference between my child with a tube and their child who eats orally? Literally JUST the way the food gets to the stomach/jejunum. Also, what's the difference for J tubes? Often parents get denied for J tubes because the french is too small, but if you use a high powered blender like a blendtec or vitamix, I have seen where an 8 fr is doable. Also, even if you have to use a sieve, that doesn't compromise nutrition, I think that statement is...disagreeable. If I use a high powered blender and then use a sieve, most likely the only thing I would get is a particle here and there that would clog my daughter's pump. And that is good! And certainly one or two clumps or particles is not going to compromise the nutrition. I understand what you meant though. Please let me know your thoughts, I think it's awesome more dieticians and GI docs are looking into this more.

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Thank you for sharing information with us. Thank you Zoe, and the Miss. That was with Zoe asking the questions. Thank you both.

Hiya!, The-unusual ~ see you on my side,))

My husband, Albert Campbell, passed away on June 4, 2022.

This is wonderful webinar. Thank you so much..really love the Recipe Builder by Compleat it really helps since it specially made for blended diet/tube feeding.Really appreciate it..All the speaker are awesome.Thank you so much

Do not agree here. This is constant brainwashing from the media and misinformation spread every day. Become compliant and you become someone else’s resource instead for your own.

I discuss the topic of n6/n3 ratios, etc for daily life vs clinical settings Dr Gura is covering here also for those interested: kzbin.info/www/bejne/hmKuloKrnNKZnc0

Very good study. Question, did the patients swallow the selenium after having it in their mouth sublingually?

Thank you so much for making this video, I’ve personally suffered with horrendous abdominal pain and many other symptoms for 7 years and I’m finally hoping to get my correct diagnosis of gastroparesis. Xxxxxx 🎄

This is horrific. Xxxx 💕