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Does anyone have short gut syndrome?
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myhorsetrooper posted:
I am new to this board and website and rather new to searching for answers on the internet. I was diagnosed with Crohns 37 years ago, had multiple surgeries, an ileostomy,more surgery resulting in short gut syndrome. Lived on TPN for several years. Been to Mayo Clinic in Florid,they sent me to the Univ of Nebraska to be evaluated for an intestinal transplant in 2010. They have an intestinal rehab program too which was successful for me. Even w/TPN I couldn't stay hydrated, septic many times - been on every drug there probably is. Crohns in remission but short gut will never change. Spent literally the majority of the last 8 years in hospital. During my evaluation I became septic - stayed in Hospt there ab 6 weeks and I say luckily. They began me on a RX oral rehydration solution & supposed to drink 2 liters a day - I call it gatorade on steriods - has grams of potassium, calcium, sodium, etc, rotate antibiotics, cut out sugar and minor med change and within 4 months I was able to have my central line removed and not been back in hospt since. My Doctors (and I have ALOT with all the diseases the cures cause and spawn from Crohns) thought I would be dead by this time last year. My problem is I have to force myself to eat a lot of days, I drink ensure (I had over the years probably every nutrional drink the doctors order) but now I don't worry about my electrolytes but my nutrition. My weight generally fluctuates about 20 pounds a month and I'm for some unknown reason a little overweight. I'm sure my metabolism is non existent. Health food stores confuse me. Does anyone know of a GREAT full nutrition (if possible), high protein drink?I'm trying to figure out what supplements may boost my immune system too. I take a multivitamin but I know I need alot more expecially protein - actually everything. I'd like to protect myself from heart disease and cancer too - both in my family. Even though I have weight on now I think I'm probably starving my body. Sorry this is so long but I'm desperate. I think I can get better answers from someone that is familiar with Crohs/Colitis and malabsorption. I've been to a nutritionist and a dietician years ago but they were stuck on the same old pyramid I learned back in elementary school I am looking for something I can buy at a health food store or over the counter. Suggestions?Preferably a liquid I can absorb better or anyone know a website I can find some reliable answers at? Thanks!
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