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Intestinal Rehabilitation – The Nebraska Medical Center



we're patients who are unable to sustain themselves nutritionally using their own intestines either because they're too short or because they're blocked or for some reason they don't work properly it's a way to use what patients have modify what patients have either surgically romantically and and really trying to get them to a point where they can manage all of their nutritional needs themselves using their own body and their own intestines so you know people don't realize because it's something you don't think about it until it's not there how important how critical it is many of our patients in the case of children many of them have had catastrophic accidents often when they're very very little and they've lost the majority of their intestine most of these patients have been through the wringer they've been they've seen multiple specialists multiple gastroenterologist or pediatricians who don't know how to diagnose or don't know how to manage their child or the adult patient with this you know very rare very rare condition and it is a very complicated condition of which not many people know how to manage appropriately throughout the country what we have at Nebraska is we have a comprehensive intestinal failure program so we are one of the leading centers in the world an intestinal transplant and really pioneered this in children and adults and and have done certainly as many of these as anywhere in the world bringing intestinal rehabilitation into that you know Nebraska was one of the first places ever to conceive of the concept of intestinal rehabilitation and it really started here in ill-defined format in the early 90s I mean 10 15 years ahead of most other places and over the years people have realized increasingly that it really can be successful patients who have intestinal failure are increasingly certainly what I've seen over the last four or five years is people are increasingly educated so they they know about what some of the different options are and they know about transplantation and in fact I would say for patients come into our here there's many patients that come here having been told there's nothing that can be done we're sending you to Nebraska for an intestinal transplant and and if that's what they need that's no problem but I think that a surprising number of people once they get here realized that in fact they don't necessarily need to have a transplant and there's a lot of other things that we can do corrective surgeries lengthening surgeries medical management that that can quite quickly strip people away from transplant and from all of the attendant risks that may go along with that path well the way that the intestine arena program one of the you know we're a very small group of people in a very large Medical Center but we still have that you know Midwestern small-town type feel where the patients can feel comfortable on getting a hold of us 24 hours a day seven days a week the facilities here are we're very lucky to have the lead transplant center of where patients can stay here right on our campus where they're getting all their medical treatment or going through evaluations and the lead is you know is a very nice facility refrigerators and it's just kinda like what I explained to the families it's like a suite you know where they have a sleeping area and they a kitchenette area we've got you know three cafeterias to where we're able to work with dieticians and our cafeteria does patient our patients with short bowel syndrome you know we give them a list of foods that they can eat and if they do if they are in the hospital or in our co-operative care unit we can make it to where the food service makes the you know the proper meals for these types of patients but we do try to make it as home and you know a home-like as possible with all the services that we can offer because we realize that you know these families and patients are making such an incredible sacrifice to be so far away from their homes and their families I think that one of the things that we all like the best about our about our job and about our program is we we all feel a very intense attachment to our patients whether they're children or adults and it is true that when people come here they often don't have much hope they may not necessarily understand what's going on in the case of some of the small babies that you know these children have always been in intensive care sometimes appear aren't even necessarily aware of what things were like on the inside and they're often told look your child's got liver disease they're gonna need a transplant and you know it's this horrible fear of not knowing for adults that maybe that people have been just chronically ill for a long long time they're often told you know you can never be operated on again it's the worst thing I've ever seen there's no hope and what we want to stress to people is that there's always hope there's always hope them we firmly believe that and I think that one of the great strengths of our program one of my favorite things about it is we're a very very close knit team and once people come and we complete the evaluation process and and we feel that there's someone that we can help they very much become a part of the family quite quickly we are on the phone with them so much and we follow our patients throughout their lifespan so you know our pediatric population you know we'll have children that come to us at a month of age and then I'm signing school papers for them when they you know start kindergarten and you see these patients grow you know grow up you know in front of your eyes and in our adult population as well you you know you see them on a you know every three months every six months you learn about their family you learn about what's going on in their life and and you know when they come to us in such a dire situation and and for whatever reason and then you see them at three months and six months and a year later and you see that the you know they just the you know the happiness that they've now having they're you know improved quality of life and you know it's just it's it's a really lucky thing that we're in this type of a role that we can see and to help these people you know make a better life for themselves our goal is to have every patient who comes into the program ultimately be able to eat a hundred percent of their calories by mouth to just eat and drink now they may have to have a modified diet there may be special things they have to do in addition but to not have to have central lines to not have to have intravenous feeding to not have to have two feeds now that's not to say that we can necessarily achieve it on everybody but that's always our goal and we never forget that our goal is to get people completely rehabilitated if we can and get them absolutely as close to normal as as possible

Glenn Chapman

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