Skip to content
Does anyone have short gut syndrome?
avatar
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!
Reply
 
avatar
jakki_g responded:
Unfortunately you posted two years ago and i doubt you will ever see this but i have to respond because our stories are way too similar! I was diagnosed with Crohns disease 6 years ago, I had my first surgery, an abdominal re-sectioning (in other words three feet of my intestines removed) and that seemed to go well until i got home and noticed the surgery site was infected. I didnt think it would be such a big deal, just a round of antibiotics and that would be it. No such luck! The doctor had to re-open the site in the middle of the emergency room, and left it open to drain, forcing me to change the infection soaked gauze every night until the 3-4 inch deep hole in my stomach closed. Just a few short months later i was rushed to the ER with what i thought was a Crohns flare. WRONG! What i had was an intestinal hernia that had perforated, causing sepsis. My heart stopped several times, and every organ in my body was either failing or damn close! they removed my gallbladder, kidney, and a piece of my liver. Unfortunately they also removed 90% of my remaining intestines. I now have less than 72cm remaining. Obviously this constitutes short gut. I was choppered to the Univ. of Nebraska's IRP to discuss transplant options. At this point i was told i would be on TPN for the rest of my life. My team of doctors and nutritionists at UNMC introduced me to Oral Rehydration Solutions, Nasty as they were i continued to drink them with little to no improvement. It wasnt until recently that i found a better replacement. My bi-weekly blood work has shown drastic improvement since i began taking these products, and i feel energized, healthy, and sometimes even normal! The company is called ADVOCARE. The doctor that pioneered the development of TPN, Dr, Stanley J. Dudrick, is on the Advocare sci/Med board. All state of the art, scientifically based nutritional products designed to promote optimal health and performance are reviewed by the members of this Sci/Med board. Go to www.tryadvocaredare.com and you will be amazed at the products that have! Not to mention the celebrity endorsements (Drew Brees, Austin Dillon and more!) I was so happy with the way these products worked for me i became a distributor to pass it to others! Read some of the testimonials on the webpage! (plus by signing up to be a distributor you get 20-40% off all future orders! But the most important thing is these products actually work. I have absorption issues as well, and ive tried every medical, nutritional, and even some homeopathic remedies for hydration, nutrition, and overall wellness. www.tryadvocaredare.com's products taste great, and the fantastic results seen in my blood work are proof enough for me. I recommend Rehydrate- it is a mix you add to a bottle of water, and because of this i no longer have to suffer through ORS solutions! I am also taking IMMUNOGUARD- which provides support for a healthy immune system; ARGININE EXTREME- helps maintain healthy respiratory and cardiovascular systems, support healthy blood pressure, and provides nutrient delivery to muscles; OMEGAPLEX- help with transportation of nutrients, cardiovascular health, promotes healthy metabolism, and helps maintain a healthy immune system, healthy skin, hair and nails. CATALYST- helps aid weight management, repairs and preserves muscles and energy levels during times of calorie restriction,;
and since i have problems with a few extra pounds too i also take THERMOPLUS- supports the body's ability to convert fat into energy, promotes healthy metabolism. But please check out www.tryadvocaredare.com and let me know if you experience the same results as i did! I am happy to help you navigate the products if you would like. (click the "become a distributor" link to take advantage of 20-40% DISCOUNT ON ALL YOUR ORDERS, $50 of product samples, and more! Best of luck! Please let me know if i can help in any way. My email is TryAdvocareDare@gmail.com
Hope this helps!
 
avatar
jakki_g replied to jakki_g's response:
Oh and that TPN the doctors said I would rely on for the rest of my life... Guess they were wrong since I no longer use TPN for IV nutritional needs... Thanks to www.tryadvocaredare.com and their products! If that's not proof of successful results I don't know what is!
 
avatar
myhorsetrooper replied to jakki_g's response:
I actually did get a notice u had replied. U r the only one in 2 yrs that has. I am going to check out the advocare. Even tho I'm overweight which totally baffles the doctors I know my lack of absorption is effecting my nutrition. My hair has gotten thin, nails bad, really weak at times but I never have the energy of a "normal" person. I'm sure my metabolism is nonexistent. There are days I just can't force myself to eat & on others can, sometimes I feel good enough to ride my horse, other days I'm so weak I can't get out of bed. It's a never ending cycle. R u on meds like lomotil to slow ur gut down? I had a major resection ab 39 yrs ago. Dr said he'd down an ileostomy then had I not been so young. I guess ab 15 yrs ago had an emergency ileostomy, came home w my entire gut opened there was so much infection my surgery site wldnt heal & it had to be packed twice a day then a few more surgeries. I am very thankful I'm off iv's & can stay pretty well hydrated but I'm tired of being tired, can't lose weight, I couldn't eat any less & know my nutrition is bad. There is no consistency day to day re eating & exercising. It's a vicious circle as u know. How long have u been on the advocare & what do ur drs think ab it? Please tell me u are not just trying to sell me something. I've been fooled by that before & spent a lot of money for nothing. I do appreciate u telling me ab it. Drs don't know. His answer was exercise daily. How do u do that when there r so many days I'm so weak I can barely walk to the bathroom & have to force feed myself. & hope I don't throw it all up. Thanks so much for replying.
 
avatar
jakki_g replied to myhorsetrooper's response:
It pains me to read you response because I know all too well the pain, exhaustion and frustration you are feeling. Yes I am trying to sell you something but no I am not fooling you into spending money on crap that doesn't work! I am trying to encourage you to try the products that have worked miracles for me since our stories are so similar. I am not going to claim these products will bring magical cures to all our ailments, because that would be crazy! And they may not work as well for you as they have me, but it's worth a try isn't it? You deserve to feel like a normal person again right? I know how it feels to be so sick and tired of being so sick and tired! Its mentally exhausting, and I can remember times I was so frustrated with feeling crappy I really didn't think it coud get any worse...and then it does. But we have no choice but to wake up each day, put on the happiest face we can muster up, and try to get through the day praying people can't see the pain beneath the smiles we force. I have been using Advocare for almost 3 months now. And literally within the first week of using immunoguard, catalyst, and omegaplex (along with exercise, healthy meals and the rehydrate drinks) not only could I tell they were working, but people around me noticed a change as well. And then when I had my first blood draw since starting advocare my doctors asked me what I was doing differently because the results had shown such improvement!! I really hope you can benefit from these products the way that I have. Before you order anything would you like me to help you figure out what exactly you would benefit most from? My email would be the best way of reaching me, and I can give you my cell phone number if that is easier. My email is TryAdvocareDare at gmail dot com. I had to write it that way because I don't know if they allow you to write it out in screenname@gmail.com format. I really hope that we can work together and find you some supplements that get you feeling better. I am so thankful to advocare for changing my life, and I just want to pass it on to others like yourself who could use a break from feeling sick and tired all the time. As far as my doctors go, there are a few products in some of the advocare lines that I have to stay away from, mainly the ones like fiber rich supplements and products designed to cleanse the digestive track. You and I do enough cleansing on our own! LoL! But overall, their products get the thumbs up from my medical army. Advocare's products are all approved by a board of scientists and doctors, one of which is Dr. Stanley Dudrick who, as I mentioned in my first post, Pioneered the research and development of TPN! So if he approves of Advocare I do too! Email me when you get the chance. I really look forward to helping you end the vicious cycle of pain and frustration you seem to be stuck in. I'll keep you in my prayers. -Jakki
 
avatar
jakki_g replied to jakki_g's response:
You can start to look at the products we offer, go to www.TryAdvocareDare.com if you order through me I can extend my discount of 10% to you. Like I said I'm not trying to make money, I just want to put great products and great people together. And your story being so eerily similar to my own has earned you a spot in my heart. I truly care an hope we can get you feeling better!

Email me when you can if you want to give advocare a chance, TryAdvocareDare@gmail.com.
 
avatar
sjourney replied to jakki_g's response:
yes I do. I have crohn's and through all the surgeries I have lost 7 ft of intestines
 
avatar
jakki_g replied to sjourney's response:
I know how that is. I have 72cm remaining. How are your nutrition levels? are you able to sustain enough through diet or do you rely on IV nutrition as well?


Spotlight: Member Stories

Hello, I was diagnosed in January 2011 with Ulcerative Colitis. I am currently on my third round of prednisone but my first round with intense Asacol ...More

Helpful Tips

Joint Pain
For those posting with arthritic problems and joint discomfort, I have lymes disease and fibromyalgia. Like everyone else, I'm hopeful for ... More
Was this Helpful?
1 of 1 found this helpful

Related News

There was an error with this newsfeed

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.