Short Bowel Syndrome – Diet, Treatment, Symptoms, Life Expectancy
What is Short Bowel Syndrome?
Short Bowel Syndrome is a condition where in there is a small bowel surgical resectioning done extensively which eventually lead to fluid electrolyte loss, malnutrition and malabsorption problems. It is otherwise termed as short gut syndrome or SBS. It may be due to a surgical resection or perhaps a complete dysfunctional large portion of the person’s bowel. It is a complication that results to the occurrence when the person’s bowel is removed.
Short Bowel Syndrome Symptoms
Persons who have Short Bowel Syndrome have the following characteristics, symptoms, and signs manifested:
- Bloating sensation
- Diarrhea
- Cramping
- Heartburn
- Malnourishment
- Fatigue
- Weight loss
- Weakness
- Dehydration
- Bacterial infections
- Sensitivity on food
- Abdominal pain
- Steatorrhea
- Fluid depletion or loss
- Malnutrition
- Easily bruised
- Pale stools
- Foul smelling stools
- Edema in the legs
- Poor blood clotting
- Bone pain
- Hyperkeratosis or skin scaling
- Anemia
- Muscle spasm
Aside from the ones mentioned, the persons who have short bowel syndrome are known to lack or deficient in folic acid, zinc, vitamins ADEK and B12, iron, calcium, and magnesium.
Shortening of the Bowel Causes problems in Absorption
Short Bowel Syndrome Causes
The etiology behind the short bowel syndrome may be acquired or congenital reasons. During the prenatal period, when a person has this syndrome it may be due to the isolation of the intestinal atresia,meconium plug or ileus, multiple atresias found in the person’s small intestines, Hirschsprung’s disease which is extensive or gastroschisis.
However, when a person develops such syndrome upon the postnatal and neonatal period, it may be due to the fact that it is a result of the enterocolitis which has been necrotized. The necrotized enterocolitis are commonly reported on infants who are premature and it leads to injury, particularly ischemic injury, of the person’s small intestines which results to the need for bowel resectioning.
Persons who are older acquire this syndrome because they have developed volvulus due to intestinal ischemia or they have Crohn’s disease which is extensive in nature, as well as radiation enteritis, tumors or perhaps trauma in the abdominal region which leads to having such disease condition.
In sum, the common risk factors that are associated with a possibility of acquiring the Short Bowel syndrome are as follows:
- Premature babies
- Problems in the vascular system
- Crohn’s disease
Short Bowel Syndrome Diagnosis
Physicians are the ones who diagnose if a person really has short bowel syndrome. For confirmatory diagnosis they let the person run down some tests or examinations such as:
- Medical history examination (protocol)
- Physical examination (protocol)
- Blood chemistry examination to detect anemia and check for the albumin level
- Fecal fat examination for determination of Steatorrhea and to know if the person is rightly absorbing the dietary fat amount that is needed for the right healthy nutrition
- Complete blood count examination
- Vitamin level in the person’s blood kind of examination
- CT enterography examination which is a noninvasive imaging test to detect abnormalities in the person’s intestines
- Small intestine x-ray examination to detect any complications such as gallstones and kidney stones
- CT scan examination to detect any abnormalities
- Colonoscopy examination which is done to inspect the person’s colon and small intestines
- Endoscopy examination which is done to inspect the person’s, anatomically arranged, esophagus, stomach and duodenum
- Bone densitometry can be also done which determines the bone mineral density of the person and because osteoporosis is a complication associated with this syndrome
Short Bowel Syndrome Treatment
In treating the short bowel syndrome the following treatment management is expected:
Diet and Nutrition Management
The particular diet and nutrition treatment management differs from one person to another. The primary basis of this are the patient’s body mass index, food preferences, age, lifestyle, gender, eating habits and the total health condition of the patient himself or herself.
The dietary guidelines in persons with this syndrome are as follows:
- Including beverage in the diet to prevent dehydration
- Limiting fluid intake during meals to avoid dumping syndrome or pushing food through the person’s bowel in a fast rate which may lead to inadequate absorption and digestion
- Eating small yet frequent meals
Aside from that, the meals should be rich in refined carbohydrates, protein, vitamins, and nutrients, moderate in fat, and low in fiber, lactose, and concentrated sweets. Other physician would require patients with this syndrome, a gastrostomy tube and under TPN or total parenteral nutrition in the beginning or throughout the person’s life depending on the assessment made by the physician.
Pharmacological Management
Physicians would usually prescribe medications to patients with this kind of syndromes. Such medications like:
- Antibiotics which prevents any resistance from bacteria
- H2 blockers for acid and gastric hypersecretion
- Proton pump Inhibitors also used for gastric acid hypersecretion
- Choleretic Agents which prevents TPN or total parenteral nutrition induced liver disease and improves the flow of billary
- Bile salt binders which is used to decrease the Choleretic diarrhea symptom
- Antisecretin agents which decreases intestinal secretions
- Hypomotility agents which aids in increasing the transition time of the intestines
Surgical Management
This is the last option. What is done here is that there is a transplantation of the small bowel which is done to patients who can no longer manage well their nutritional status with the given treatment management mentioned earlier.
Surgery For Small Bowel Syndrome Employs transplantation of the Portion of the Small Intestines
Prognosis and Life Expectancy
There is an unknown cure for short bowel syndrome. The life expectancy of most infants having this kind of syndrome will lie between 4 to 5 years of survival rate. However, there is a possibility with improvement as a result of surgical procedure or the treatment done. When this happens, there will be an improvement, made gradually, in the absorption of the nutrients.
Complications
The possible complications which are associated with Short Bowel Syndrome are as follows:
- Renal stone formation or kidney stones
- D-lactate acidosis
- Peptic ulcer
- Cholelithiasis or gall stones
- TPN liver disease
- Anastomotic Ulceration
- Osteoporosis
- Weight loss
- Bowel obstruction
- Necrosis of the bowel
- Osteomalacia or weak bones
- Overgrowth of bacteria found in the small intestines
- Transplant rejection (whether acute or chronic rejection)
- Nervous system degeneration due to the deficiency in vitamin B12
- Portal, hepatic or mesenteric thrombosis of the vein
I have 5 feet of small bowel. No tpn. On loperamide only tat makes me not hungry and not able to pee and dizzy. Am I gonna live or am o gonna die and how lomg do I have?
How are you doing. Any weight problems, dumping, etc. Trying to get info for a friend who now has 5 ft small intestine. Everything goes right through her. Kelly
I have my 2 ft. Of my small intestine left. I have no colostomy bag or catheter. God help us survivors. I hope your friend is ok and knows the Lord and she obviously has a great support group.
My husband has 110 cm left of his small intestines which is only 3′ 7″ Lost it bc of lack of blood flow due to a dissecting aorta. It’s benn 3 months since takedown of his iliostomy…. I’m shocked that 17 feet were removed?? Is my math right??
My husband also had a dissecting aorta and lost all but 2 ft of small bowel. Had ostomy for 15 months but now is bag free. We had NO INFO given to us after the last surgery. Everything I have found was on my own! We have found stuff from University of Virginia that has help steer us toward fluids and foods that work. God bless you both! Know you are not alone!
My husband also had a dissecting aorta and lost all but 2 ft of small bowel. Had ostomy for 15 months but now is bag free. We had NO INFO given to us after the last surgery. Everything I have found was on my own! We have found stuff from University of Virginia that has help steer us toward fluids and foods that work. God bless you both! Know you are not alone!
Did you try Opium Tincture? That slows my bowels way down.
Get your fluid intake up, as well as your electrilites. Feeling dizzy is often a sign of severe dehydration. Just because you’re not thursty doen’t mean you don’t need extra fluids. This will also help with your fatigue and overall quality of life. Get with a doctor who really listens to you because, not only are our cases rare, each one of us is different. If your doctor doesn’t acknowledge this, GET ANOTHER DOCTOR.
Doing oral rehydration salts but still not enough to keep hydrated. I’m about to check into a saline drip. I don’t know what else to do. My mom was 56 we she had issues and only had 18” of small intestine left. She is now 73 and I cannot keep her hydrated!! Frustrating
I’m 5 years with 2 feet. Nutrition drinks help. I work almost full time
I was born with SBS, Drs said I would not live past 5yrs, I’m 31 yrs old today. Don’t get me wrong, itso a burden but you can live a full life. I played ice hockey for 20 yrs and Dr’s can’t believe that I’ve done so well. Also it was 1985 when I was born so the medical technology wasn’t nearly as good as today.
Can you email me alexa119278@gmail.com I have a dauggter with sbs and would like to know what she can expect once shes older. She will turn 12 but is the size of a 7 yr old. Thank you.
Hi I am now dating a man with sbs due to an accident nearly 3yrs ago and he doesn’t see dr. My question is can he still have babies? Does this affect that at all
My best friend has SBS from a medical surgery gone wrong when she was six months old. She’s now 34 and has been on TPN all her life. She doesn’t have any of her small intestine anymore after having two transplants (both failed) back when she was 20 and 21. She was able to maintain everything pretty well up until about a year ago when her body began giving her problems. She started losing a lot of weight recently and cannot tolerate any food aside from her TPN. She lost 15% bone mass in the last year and just suffered a bacterial infection at her port site. I know she was also told she would never live past 5 years old and she’s done great until now. I’ve been praying she will recover again and be okay soon but am looking for some answers to why now all of sudden her body is giving her so many problems. 🙁
I’m a mother to a 5 year old and I’m constantly scared of what’s my sons future !! Reading what you wrote gives me so much hope !! My son has sbs and is tpn and lipid dependent .. your comment is god sent to me !
I have a 3 year old grandson born with shirt vowel syndrome and / we are worried to death about him . Can u please communicate with us about your situation ? You just gave me hope for his long term survival. My email is Lovemyap@aol.com Thanx, Carolyn
I have 3 feet and 10 inches of small bowel. My food comes out through my ostomy as I eat, it’d already coming through. I. Too, wonder how long I have…I’ve been told not very long
You have more than I do, and it depends on what was removed…I was on tpn 18 years ago, but weaned off after my ostomy was reversed…It has been almost 18 yrs tpn free….This is a condition that drs do not understand, or care to, because there is no money in help managing it properly, until you, the patient, get a handle on what you need to do….I manage a page on facebook called” Shortbowel syndrome survive and thrive” I can be reached there. and would like to have some successful survivor stories posted there, with suggestions….I am hoping to have the time to devote more to my fellow sbs patients soon. AS I know a fulll and active life is indeed possible with a little effort, and good information…Hang in there!
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Rosemary,first of all, ask your gastroenterologist to get a good dietician on board . I have been dealing with having less than 4 feet of small bowel since Jan . of 2012. It isn’t always easy, though. Are you having problems with low tolerance for infections? This site is a fantastic site for keeping you informed of any progress affecting this disease. staying as far away from those who are ill, is are a must. As far as as life expectency,,the prognosis is not good without a transplant. Good Luck, Judy
That is not true. I have 27cm of intestine…yes that’s right I said centimeters! I was on TPN for only eight months following surgery even though doctors assumed I would need it for the rest of my life. Today I am happy, unbelievably healthy and quite frankly I don’t see an expiration date on me anywhere. People are capable of miraculous things, regardless of what medical professionals may tell you- you are capable of beating the odds.
hi my child has 30 cm of small bowel. hes 4 months old now and has been on tpn and lipids since birth. he also has a gtube.
My grandson had 25 cm left. He is now 7 years old. He has mic-key button and receive elecare formula at night. He eat food during the day. Sugar is not his friend so no sugar for him.. through God’s grace he is doing good! Lean on the Lord through this journey! Praying for your baby!
I would like to connect with you as soon as possible, by phone?? I have agreed to foster an 18 month old boy who has SBS but I want to know from parents like you what to expect–what works and what doesn’t etc. Would you be willing to have a discussion within the next couple of days?? My number is 832-298-6034–I live in Houston. Unfortunately I don’t do facebook–myra..I hope your baby is doing as best as possible..Thank you
My husband has 110 cm left of small… no TPN and labs are good… but I worry about his life expectancy
What doctor did you see? Where do you live? Please email me alexa119278@gmail.com
My daughter is 12 yrs old. She had a broviac since she was 1 week old. She had only 0.6-0.8 centimeters left. Probably has not grown much. How can we get in contact with your GI doctor. Shes tired of her broviac and TPN and Lipids. Please contact me.
Call UCLA’s pediatric short bowel syndrome. I’m 52 but UCLA doctor/surgeon dr jabaji is referring me to the pediatric short bowl syndrome program I’m so excited cause I was really impressed with him so I bet the SBS program can change my life
Hi – May I know your age? What parts of your small intestine are left? My brother has an intestine resection and has 20 cms of it left. We are confused and worried what to do to give him better life. He is not on tpn but has problems like severe abdominal pain and at times vomtings.
How did u get your intestines to absorb? I had over 75% of my small intestine removed and have pic line and 12 hours of TPN feedings everyday and have short bowel syndrome, if I don’t start to absorb my life expectancy isn’t too long. Thank u, wish u well. Lisa 703-888-7215
That is very encouraging to me. I have only 110 cm of short intestine and sadly have horrible Short Bowel Syndrome. I’m on TPN Feedings thru my PICC line for 12 hours everyday. I was told my life expectancy is not long and I wanna live for my 3 Precious kidos. I have some questions can you please call me. I hope u are doing better. Thank you, Lisa 703-888-7215
How did your small intestine start to absorb? I’ve been on TPN for 9 months and don’t have much of my small intestine….but can’t absorb still. Thank you, I’m glad you were able to do so well, gives me slight hope. Thank you for sharing, Lisa 703-888-7215
They took most of my small intestance and now ordering a colonoscopy and hal to take b12 once a month in the atomic also my iron is 26 so they put me on 600 mg iron tabs ….hoping I’ll be ok
I had all but a third of my small intestine remove back in 1963 due to a burst intestine… I was nine years old at the time … I have had problems for my entire life .. Took b12 injection up until three years ago!! I am now 60 years old and have learned to adapt!! I do have bad days though!
how much of your bowel did u have left MY GRANSON IS THREE WEEKS OLD AND THEY REMOVED EIGHTY PERCENT
I too have a 3 year old with 20 percent. He has had 3 step procedures. Currently, will need another gut surgery. He had his 80 percent remover 3 days after being born. He had maltotation.
They left me with 1/3 of my small intestine doc tells me im abnomal I grew 6 foot got to a amazing 220 I didnt take pills or what not after I left the hospital right before my first birthday . They gave me some when I was to young to remember im sure but when I was old enough to take my own meds I wasnt on any from that age on
Hi Everyone,
I had 96% of my small bowel removed way back in 1984! at the age of 30.
I am now 62 years young.
I was given a colostomy bag ( Hartmann’s Pouch) and am living with it and enjoying life.
Blood levels indicate that my magnesium, calcium and B12 levels are mostly on the low side of normal. Yes I had two episodes in 31 years where my levels dropped and needed intravenous supplementation.
I have found that the fizzy magnesium (SloMag) works best for me.
Best of health and hang in there. it’s worth it
I’m 22 years old I was born with short Gut! You give me hope 💓
I had complications from a mini whipple and developed gangrene in which they removed 90% of my small intestines I have a G-tube and can only eat liquidy foods does anyone else have any ideas of what I can eat to make me feel satisfied or has anyone recovered after having lost so much intestines
I have been trying the Vitamin E enemas to heal up the colitis and using very small dosage of drinkable opium tincture for slowing the bowl movements. It seems to be starting to form now, but I need to sleep a lot. I am hoping that this works.
I have SBS due to a bad colonoscopy. I had no digestive diseases. I have only 43″ of short intestine & no large intestine. I am on TPN & suffer from dehydration & muscle cramps due to electrolyte loss. I have lots of diarrhea with no solid matter. I can eat but have to limit my oral fluids to 1 liter per day or it goes out my bag. I was on lactade ringer drip (1000 ml) but most of it is lost when I go to the bathroom after the drip; otherwise; I don’t urinate much. I haven’t found a doctor who can help me & there is so much contradiction on the internet. I need help.
geomike: this sounds like my story. Have 48″ small bowel for last 3 years. I gained 40 lbs since my operations. Have .85 liters TPN at night. I get a 1 litre saline drip every week and visit a dietician every 2 weeks. I take liquid codeine to firm up the output in my ileostomy but it doesn’t work. Muscle cramps in my right foot and leg at night. Hip is killing me too. Crackers are great for firming up as well as potatoes, pasta and rice. Cottage cheese is great for the terrible heartburn. Dietician said it is very high in calcium like Pepto Bismal or Tums. Works wonders for me. Immediate relief. Try drinking only 1 or 2 ounces of liquid at a time every half hour with a cracker or dry cookie (no icing). You will be rehydrated and output will be thicker. Dietician said to try original Gatorade (not G2) and add salt. Hope some of this helps you. Best idea is ask for referral to dietician.
Try opium tincture. I was down to 89 lbs and kept losing weight. I am now 140 . It was 1994 when I started the opium tincture
Where do you live? I’m in Ga, a girlfriend has SBS, has a great surgeon who saved her life, also he has a special nutrion, been dealing with thus for 10 years, she is VERY CONFIDENT AND SECURE IN HER DOCTORS CARE
DR. GALLOWAY, EMERY UNIV. ATLANTA.
I am 31 years old. I have 10% of my intestines left since I was two weeks old. I was in hospital until I was 3.5yrs old and in that time I had twelve operations. I was given a one out of five chance of surviving. I have big scars all over my stomach. I currently take loperamide, sodium bicarbonate, multivitamins, ensure plus supplement drinks. And I have vitamin b12 injections every three months I don’t have an ileostomy bag on as i was able to get that removes when i was younger. I currently eat little and often and i drink up to three litres of water a day as i have chronic kidney disease due to reoccurring kidney stones. I am able to go to the toilet normally but i feel embarrassed when i have to use a public toilet. I have two beautiful children aged six years and a six month old. I also currently work full time as a nursery nurse and i find my job very rewarding. I believe i was given a second chance in life and i grab every opportunity at life that i can get. I have regular check ups at hospital as i am under three different consultants and a dietician.
Bravo… Wonderful….
Are you willing to discuss pediatric sbs with me?? An 18-month old will be coming home soon and I would love to get your advice. 832-298-6034 myra
I have short bowel syndrome due to effects of pelvic radiation. I have 1.2 m of small bowel was on TPN for 3 years had gross diarrhoea up to 16 /day and a life connected to the toilet.
Met a wonderful dietician. I am on a gluten free, lactose free and low fat diet, take Ensure drinks 1,500 calorie supplement daily on loperamide 4 tabs, 4 x /day and codeine at night, lots of vit supplements and life is so much better.
Hi sharon,
My mom is suffering from the same problem.she too had to undergo pelvic radiation and ended up with and after five years. How do you manage ?my mom has lost a lot of weight.can u tell me what all do you eat how u manage? What all supplements u take? I have to admit her to the hospital for ton and albumin thru iv. Can u pls share all ur experiences with me so as to how can I help my mom mange her condition she is 80 years old. She feels very heavy the moment she eats a little. So there is not much input. The dr has advised tpn for a week… should that be sufficient or u need to do it again and again?please help me. I am very worried for my mom. She’s all bones.
I’ve had SBS for the last 6 1/2 years. I’m 56, unbelievably strong and pain free. I have to be carefull regarding super high sugar foods and drinks like candy, sherbet, lemonade, etc because it will lead to ”dumping” where suddenly my osyomy bag will fill up repeatedly causing everything in my got to evacuate all at once, i.e. 4 times of bag evacuation over the course of an hour. Super high salty food and drinks can do the same thing. I’ve tried super high protien diets, however this causes great fluid loss which, for me, leads to muscle cramps that feel like my muscles are being ripped from the bone. So I eat like a normal person would, regarding variety, just a lot more. If I were normal I would need to consume 1500 calories per day to maintain my weight. I must eat 5000 calories daily to achieve this. Bag evacuation, for me, can be upwards near 20 times per day and unfortunately i need to set my alarm to wake up every 2 1/2 hours at night to avoid bag leakage. I know this sounds nightmarish but it gets easier and you will adapt. Pay close attention to your fluid intake. For me, I drink all day long. Again, be mindfull of high sugar drinks, because dumping is counterintuitive to staying hydrated. Yes, there will be an adjustment period for most where things migyt seem dismal or hopeless. You may feel like ”there’s no way I can do this for the rest of my life!” Trust me, you can. No matter how difficult your initial transitional period is, YOU WILL ADAPT, I PROMISE. In the beginning it seemed as though everything was an insurmountabe trial and error. But, believe me, we all go through it. Eventually you will find your own, individual groove. Your friends will be patient with you having to frequently go to the bathroom, but at least it’s quick. Adjustments like, instead of eating first and then going to the movies, I go to the movies first and eat afterwards. That way I don’t spend all my time in the theatre bathroom instead of actually seeing the film. Remember, everyone like you, and there are some out there, has been through what you’re going thriugh and come out the other side. I can still exercise, go camping, swim and enjoy life again, BUT WIYHOUT PAIN! Find an online For7m or support group. This helped me tremendously. It helped me feel like I wasn’t alone. Plus you will be able to get answers to your specific questions because someone has already been through it. Surround yourself with loved ones and friends for support. Cry when you need to but just remember there is reason to be hopeful. Life might be a pain in the ass sometimes (pardon the pun) but whose life isn’t? We all have our lot in life and all of us has our own set of challenges. You WILL be ok and you WILL get through it, no matter how hoerwhelming at first. God bless 🙂
It’s super important to let any of your medical professionals know your situation. Often you will need more medication or a different way to get it into your body such as IV antibiotics rather than oral. Each person’s pipes are different and if you aren’t clear, and emphatic that your doctor documents your situation, you could unnecessarily have to endure the confusionas to why the medications you’re injesting aren’t working. The reason I say emphatic is because you wouldn’t believe how many health professionals leave this out of your record. I have a super bad back and need to ge on more pain meds than is normal. It’s ridiculous how my doctor thought I was a drug addict simply because he never paid attention to the history I gave him. Be sure to say SHORT BOWEL SYNDROME and I DON”T ABSORB THINGS THE SAME WAY AS OTHERS. Be proactive with your health and don’t be afraid to be a thorn in all of your doctors’ sides in order to have your needs met. Remember, your doctor doesn’t have to be your best friend, but he has to treat you no matter how much you ”inconvenience” him.
If you experience severe muscle cramps be sure to keep pickle juice in the fridge at all times. Even if the pickles have all been eaten, save the juice. Drink some of this, no not a huge glass, and your cramps, no matter how severe, should subside in aboutt minutes.
Researchers have not found that eating, diet, and nutrition play a role in causing or preventing short bowel syndrome. The main symptom of short bowel syndrome is diarrhea—loose, watery stools. Diarrhea can lead to dehydration, malnutrition, and weight loss.
I lost eighteen feet of bowel in 2001 and awakened in the ICU with the World Trade Center coming down…I told them that I was dying as the gut pain was so excruciating that even the morphine did not kick in…ibam a quiet pain person as I was trained as a ballet dancer to live with pain but this strangulation of the bowel was so extreme and they waited 24 hrs too long while eighteen ft of bowel infarcted black and painful
They kept me alive with nine pints of blood and a heart revival and here I am fifteen years later living with my four feet of bowel….it is a challenge…but if I stay on high protein
Low Oxolate for the joint pain additional B 12 and magnesium
I sometimes feelwelll
I am fatigued and sick a lot as my immune system is not the greatest and I also suffered for three years with undiagnosed Lyme disease..
I find that sticking to the FodMaps diet is crucial although I do have my half cup of coffee with a scone every morning…and a little bit of vanilla I’ve cream at night
Other than tha it has been years of chicken fish hard boiled eggs cooked soft low oxolate veggies very few salads which Inloved and liquid supplements have saved mylife
I am up from One hundred to one hundred and sixteen pounds
Once a year I seem to LAndin the hospital with complications from a GI bug with cholera like symptoms
I do use diluted Gatorade daily..you can do it
Sometimes it is frustrating as I miss out on events when I am sick andas a dancer I woul drive myself to the limits
Now, sometimes I just need to rest
I meditate, play music ,the piano,work love and ride the waves
No one seems to understand as I look normal these days having gained the weight back….
I have outlived my prognosis which was dead on the table
Gluten free seems to have helped the arthritic pain with small amounts of boring protein
I feel for all of you
Namaste
Floy
Ok
So wonderful to hear from all of you. Have had crohns scince I was aprx. 16 diagnosed at 25. To make a long journey short, many surgeries, blockages, ng tubes, hospital stays,ivs. 5 children,1 passed away. 2 husbands, been at deaths door. Now have an ileostomy, short bowel syndrome, arthritis,etc. Tpn is new in
last July. Tried the diet, but too much dumping, deyhration. Did ivs at home but couldn’t keep up. still can’t. Was losing too much weight, and malnourished. Also getting sore on my body from being malnourished. Anyway. Glad to see you all alive,getting thru all this. I have come to terms with dying, we all do. Would like it to be later than sooner. So, have stared to plan my funeral or celebration, get a stone, etc. Still take care of my mom, she is in an assisted living. Planning her service too. Then my children won’t have to. Have 4 college educated great kids. (1 nurse). Is this proactive or weird. Too me, it’s ok. I want things in order so I can go on with enjoying my life,(which I do) , although Mayo Clinic is my home away from home. I am 62, and I feel everyday is a gift. Told my internal med. doc I want quality, not quantity. Kind of threw him off, he’s too young and healthy! I heard the 5 year .line too Not so much rom the docs,they are noncommittal, but from you all, who are in the trenches,,so to speak. When the came into my hospital with the news of tpn for life speech, they all looked so ready to deliver bad news faces. But it made me happy. No more worrying about what or what not to eat or how, much,you all know the drill. And the pain….I will stop now. thanks for allowing me to vent..And bless you all….See you when I see you…… Namaste …..Wendy
hi my child is 4 months old and has 30cm of small bowel. he was diagnosed with an atresia at just 17 weeks gestation. he had the surgery 6 hours after birth. he now is on tpn 14 hours a day (started at 24 hours a day) and he also has a gtube that gets 25ml of milk an hour through 24 hours a day. hes also able to eat 25ml by mouth 5 times a day. hes currently 14 lbs and is doing great. we are hoping to be off tpn by 6 months old. hes gains weight so well and loves to eat. just wish i could give him more…he spent 2 months on the nicu. he wasnt home a month before he ended up in the picu with a stomach virus. he was severly dehydrated. they sent him home after a week and 2 weeks later back in the picu (currently still in picu) with a central line infection. it sucks because i treat his line with such great care. they have been trying to save the line by letting antibiotics sit in the line. we are looking to go home in a few days
My daughters GI doctor tells me to give her as much as she wants. The more she eats the more the intestine works and grows. The first hospital she was treated at told me not to go over what they say to give her which was 5 ccs of formula every 3 hours SMH. When I switched hospitals than GOD her new GI said no give her as much as she can tolerate we need her to eat the most she can by mouth and not G-tube or Central line. I would also take good care of her line and she would get alot of infections. It has to do with the bacteria that grows in the intestine and flows to hide in the central line. Her GI put her on Ethanol lock. I flush her with that after her TPN is done first the saline then with the ethanol I live it there until next TPN you need to withdraw the ethanol back never flush it inside. That has mantained us away from the hospital for 3 yrs and counting. Faith is number one. Email me alexa119278@gmail.com
I have nearly the same story I would love to connect with you
After reading reviews I’ve come to the conclusion we are all very different and our requirements are different,I have 90cm of bowel after cot racing sepsis after an operation,I was told I would die and to get my family in to say goodbye,that was 2012 now at 2017 I have had numerous ops now left with ileostomy fistula and permanent tpn of 3000 mls 7 days a week. Even so I get severe dehydration, dumping nausea joint pain,I am also taking 40 tablets a day to slow down output etc etc but I have had amazing peace thanks to my heavenl father,so if I have another 6 months 6 years or 16 I will use my experience to help others ,which is what keeps me going.life can be hard,but you all sound like amazing people ,hang in there yeah
I’M 62 and have had short bowel since I was 27. I’m not exactly sure how much bowel I have left ‘maybe 5 or 6 ft. total’after 3 operations for Crohns in 4 yrs. Drs. weren’t sure if I could survive without TPN after last surgury. It was a struggle at first adapting with the diarrhea and having to change my diet but I managed .I have found that over the yrs ’36 now since last surgery’my guts seem to have adapting more so that I don’t have as much diarrhea and certain foods don’t bother me like they use to.17 yrs ago I started working out ‘just lifting weights’and am in the best shape of my life.I’m 6 ft. 170 lb and do anything or go anywhere I want.Even have a few beers or few drinks with no bother so maybe I must be one of the lucky ones.My doctor’Ihad been seeing him’Chapel Hill N.C. since I was diagnosed at 16 with Crohns that he was worried at the first few yrs if I could make it. the big thing is LEARN TO ADAPT.OVER TIME YOUR BODY WILL TO.
I respect ur acceptance… I m 40yrs old lady…. A short bowel case…. A real blessed one… I went thr this when i was 26 yrs old… Managing life… Though with ups n downs still happy with my self…. 9898037658 is my mobile no. Any one who need to ask… Or take benefit from my experiance… A warm welcome…. I have 6 feet of bowel… Jejuno colon type. What ever comes to us we r the only responsible… Still2things are there in our hands… Prayer and try n try. Life is not in span… It is in this moment… Live it… Accept all ur pains n relish all ur pleasures… Stay at peace… Love ur self….. Love ur self…. Love ur self.
Hi my name is Dyllon Dixon I am 23 years old and my Son is only 6 Days old. He was though to have sbs at only 2 or 3 days old and diagnosed on the 3rd or 4th day. It has been a very hard and troubling time for me and his mother because his 4 year old little sister has not seen him yet. He’s been in the NICU since 2 days old and has had 2 (basically 1 surgery that prolonged 2 days to monitor the health of his small intestine) … dr’s gave us the option of ending our sons life but that is Definately not an option. I want my Son to live the best life he can but it pains me for him to go through this as I was born with hemophilia b and am all too familiar with growing up in and out of a hospital. I will do any and everything possible for him. And try to Keep Faith at all times. Just wanted anyone with knowledge on raising children from infantile stages or anyone whose had sbs since birth to reach out if at all possible. 4783353935 is my mobile number. Jdesco478@yahoo.com is my email. Please contact by text or email as we as still spending 10 hours or more at the hospital bedside with our son daily.
My sister has 3 feet of small intestine since Oct 2014. unable to eat due to severe gastric reflux. on TPN. On Reglan and Protonics. High Aluminum levels stopped Carafate. Eating increases reflux back flow into lungs. Multiple lung infections. Bones brittle. Has had one Kyphoplasty. now needs another level. Initial surgery was infarct of SMA has a bypass graft for blood flow. What reflux meds can she now take. At a standstill. She is 53. She has multiple doctors including UCLA TPN. Needs something new to help. She has constant back pain and stomach pain. Need help at this point. Any suggestions will help.
I am a young 44 yr old woman who wants to live. Have 3 amazing precious kidos that I must live for but have only 110 CM of small intestine left and have Short Bowel Syndrome. So have been told not long life expectancy….and am on 12 hours daily of TPN Feedings in my Pic Line…..please if anyone can give me any helpful info on how to get my little intestine to start to absorb, It would be so greatly appreciated. Thank you, I pray for all of us enduring this. And for healing miracles for all of us. Lisa 703-888-7215
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