Short Bowel Syndrome | Q&A with Samuel Alaish, M.D.

Samuel Alaish, a pediatric surgeon at the Johns Hopkins Children’s Center, discusses causes, symptoms and treatment options of short bowel syndrome, a condition that occurs when a child’s bowel, or intestine, can’t effectively absorb nutrients from food. To learn more about Dr. Alaish, visit bit.ly/1RqXC1p.

[@samantharichards6037]

My cousin Sophie, got it when she was 5 months old and my aunt and uncle had $500,000 in hospital debts. She was a really healthy baby and then she started to cry a lot more than usual and throwing up more than usual, and she had only 8 cm of her intestines left. She was not supposed to make it, no one thought she was going to, but now she is five years old and has had 5 major surgeries before age 3, and spent her first year of life in a hospital, she had to relearn how to eat( drink from a bottle), she is now five and has a feeding tube in her stomach, and her line on her shoulder. We live in Michigan and about once every month she has to travel to Nebraska to get a check up from her doctor. He is super nice and she loves him. She has to do TPN everynight before going to bed. The whole point of the story to spread hope. She made it through so much more than I could ever get through, she made it to 5 years and is super active, healthy, and she is slowly gaining weight which is good she is super skinny, but she is always happy, and is a joy to be around. Somethings about her is she hated the idea of the tooth fairy ever since she lost her first tooth. She didn't want the fairy to come because she thought it was creepy to have a fairy come inside her room while she is sleeping and take her tooth. She loves baby dolls and playing mom. She loves horses and wants to have one so badly, but they can't afford it, and don't have the space. She has super long dark eyelashes, big eyes, cute brown hair and pale skin, she is seriously beautiful, and it's rewarding to know and be close with someone like her, even if she is only 5 years old. I love her so much and I only hope that other people have the privilege to have the same opportunities that were given to her for their children.

[@GIguy]

I’ve had short bowel syndrome for many years now, in my case it was due to a very severe case of Crohn’s disease, combined with intestinal cancer. I was diagnosed with Crohn’s disease shortly after my 20th birthday, when I was 21, my entire large intestine ruptured, killing me for two minutes, but luckily I was in the hospital when it happened, otherwise I would not have survived. That was the first of 37 operations, over a 30 year time span, leaving me with less than 5%, of my entire gastrointestinal tract. I have been on TPN several times throughout the course of my countless hospitalizations, however, I have found a combination of dietary supplements in liquid form, or pill form, which I grind into a powder, along with a very limited diet, that keeps me alive and relatively healthy without having to go on permanent TPN. There are no words to describe the hell on earth I have been through, and as many G.I. patients can attest to, quite often it is a fate worse than death. I have had eight different intestinal diversions, including a j pouch, 2 k pouches, and 5 ileostomies. The reason I’ve had so many is that they all failed at one point or another, I just think God that my current ileostomy which I got last November, has been working far better than any other ones I’ve had. Because I also had to deal with cancer, which came back three times, as a result of the countless drug therapies, radiation, chemotherapy’s and surgery, I now live with 11 chronic diseases, nine of which are direct side effects from the Crohn’s disease and the cancer treatments, the most difficult being severe chronic and often debilitating anxiety and depression, along with PTSD. I desperately tried to live my life during all those operations and hospitalizations, and managed to get two masters degrees, in medical laboratory sciences, and medical radiation sciences. Ironically enough, I had taken one year off before I was starting university, just to work and save enough money, as my parents promised to pay for half if I paid the other half, it was then that my Crohn’s disease became unbearable. The reason I say it was ironic, is because I was supposed to study music, as a vocalist, pianist, and trombonist. It never occurred to me to work in healthcare, and had I never gotten sick, I would’ve ended up in music, but after experiencing the healthcare environment from a patient’s perspective, I suddenly fell in love with the idea of working in that environment, and because I was not able to work, I instead Took night school University courses, to get my degrees, and managed to work as much as I could during all those operations, and I thank God every day, because I could not imagine a more rewarding career, so you see, even out of the worst possible thing can come wonderful things. Unfortunately I was forced to retire for years ago at the age of 46, because my health was just far too erratic, never knowing when I was going to be sick. My manager and an HR representative sat down with me and suggested I go on permanent long-term disability, because if I didn’t, they would be forced to lay me off simply because I was completely unreliable because of my health, something I was not at all suspecting or ready for. Having an invisible disability has its own unique set of challenges, Mostly because people are just ignorant, and because they can’t see a noticeable disability, they automatically accuse you of faking it, until I lift up my shirt, and show them the nightmare of deep horrible scars all over my abdomen, not to mention my ileostomy bag. It is not an easy thing to live with at first, I am a 50-year-old man, that found myself literally crying all night and all day, until I finally found a therapist that was able to give me a little perspective, so I can now appreciate what I do have to be thankful for, that I survived, when on three separate occasions, all of my 13 specialists told me I was going to die for certain, but I somehow survived. I’ve always believed that everything happens for a reason, good or bad, and as such, I know that I was made to go through this so that I could share my story with as many people as possible, but not for fame or fortune. My hearts deepest desire is merely to help people going through what I’ve been through, feel at ease, by telling them my story, and that it’s never as bad as the doctors tell you, and that anything is possible. By all rights I should have been dead three times already, but I am still here, and because of that, although my fields of study have always been scientific, I am going to attempt to write a book about my experiences with Crohn’s disease, intestinal cancer, and living with the other chronic illnesses, multiple surgeries, and facing a life most will never have to experience. My only goal in life at this point, is to make sure that before I die, I’m able to help even just one person, going through what I’ve been through. If I can make a difference in only one person’s life, then I can die a very happy man, because if we can’t help each other, then who can we help? I have a lifetime of experience, and while my case is extremely rare, representing only .01% of all G.I. patients, I want to give people hope, who have none, when they are in the depths of despair after being diagnosed or after having surgery, not knowing what their future holds. If I can just show them that there is indeed life after the hospital, if I can put a smile on their face, and hopefully give them a more positive outlook on life, then it was all worth it, and I would do it all over again if it means being able to help people. Thank you for listening, and if you have any questions or comments, please feel free to respond to this post, and I’ll be happy to get back to you as soon as I possibly can, and if you live in the Toronto area, perhaps we could actually meet up, and talk over coffee, I’ve done so with many many people already, and have made some very good lifelong friends because of it, cheers all!

[@goldwingman1500]

I had half my bowel 3foot of gang green intestine taken out adhesions i have B12 inj i have trouble getting medication i take Questran Lite meds are by rear end bugger to have .no one can name what i have ?

[@Sam-fp8zm]

eat paleomedicina diet

[@m.vasquez2640]

My son was born with sbs . he is now 3 years old ! Has downs also, Trisomy 21 to be exact. He is growing and almost walking on his own. All the hospital stays is what we dread. God is great! Awesome life story amigo! Cant wait to tell my son about you one day!!

[@LindaMcbain-g5e]

I have short bowel from Crohn's surgery that I had peritonitis was on tpn 11 yrs. Came off 15 yrs but now I am having severe issues major pain to eat n unbearable . How do I get the proper care ? I can't handle alot of mornings . N the past yrs n half I don't wanna eat I'm living off ensure I don't want pain plz give advice .really sorry u been threw so much more than I but I only have 4ft of intestine all together. Lg n sm

[@infp_intp]

Thank you. I'm Korean, and my mother has a short bowel syndrome. In Korea, I can't find a lot of information, so I'm here to search for some good news for my mom. I was very impressed and become hopeful after reading your letters. Thankyou

[@LindaMcbain-g5e]

It's the very worst pain ever.

[@jenniferjohnson117]

Can this be caused from an abdominal surgery?

[@JohnsHopkinsMedicine]

For specific questions we suggest reaching out to a health care professional.

[@sorayaanne6480]

My younger brother (11 years old) was born with a twisted bowel and was in hospital for 6 months and had 6 surgeries. He's going strong, the last year he was having bad pains in his stomach to the point he couldn't walk. We thought straight away that it was his bowel but turned out to be kidney stones. Everyday I think of him, most days I cry due to worrying about him and worrying about how much longer we will have with him. Such a stressful thing to go through and we can't imagine life without him.

[@KeeIowa]

My doctors don’t know what exactly happened, it could be that it twisted or more likely a blood clot popped up in a vein that was connected to my small intestine and the intestine died and got gangrenes, almost bled to death during surgery. Like 15% of blood lost.

[@possumbold]

Very informative, thank you for posting. Do you know a specialist centre in Australia? I’m an adult with SBS,

[@SwiftMoneyofficial]

My small intestine is equivalent to none, whatever I eat gets washed out. I am under weight and skinny thin guy. In medical term its called Short gut syndrome. Do you have solution to my heath?

[@prestonlang8480]

Dr. Alaish mentions studies that demonstrate improved outcomes for SBS through a multidisciplinary approach. Would anyone have links to these studies?

[@MsLee-oh7hy]

I was born with SBS my umbilical cord wrapped around my small intestine and cut it off. I finally scheduled an appointment with a general doctor for a referral to a GI doctor. I am excited to see how it goes.

[@leftshark3091]

How do you know if you have this? Can it be diagnosed, or you can just tell by the symptoms?

[@JohnsHopkinsMedicine]

Hi Left, everyone is different. For many children, the main symptom of short bowel syndrome is diarrhea-loose, watery stools. Diarrhea can lead to dehydration, malnutrition, and weight loss. Dehydration means the body lacks enough fluid and electrolytes-chemicals in salts, including sodium, potassium, and chloride-to work properly. Malnutrition is a condition that develops when the body does not get the right amount of vitamins, minerals, and nutrients it needs to maintain healthy tissues and organ function. Loose stools contain more fluid and electrolytes than solid stools. These problems can be severe and can be life threatening without proper treatment. Other signs and symptoms may include bloating, cramping, fatigue, or feeling tired, foul-smelling stool, heartburn, too much gas, vomiting, weakness. However, again, each person is different. People who have any signs or symptoms of severe dehydration should call or see a health care provider right away.

[@mreenknox6711]

I have a child with sbs and was born with it is now 2yr and has 48 surgery

[@thedemonlord8685]

wow that sucks. but atleast we have this medical tech and we can treat them now

[@tshikosintshavhi8319]

I have a son who have short bowel syndrome I’m in South Africa please I need help

[@sorayaanne6480]

Someone get this person and their child help!

[@danilopeterson3467]

have what has been called congenital Short Bowel Syndrome since birth. My symptoms are frequent loose stools (foul smelling and sometimes fatty) and sometimes even diarrhoea and steatorrhoea which is essentially actual fatty foul smelling diarrhoea. I take a vitamin and nutriment regimen (orally) and consider myself lucky that I dont need parenteral feeding or transplant. I just Need to constantly be aware and on the lookout for the nearest available toilet facility near me as I do have many urgent callings (sometimes along with accidents as well). My gut can and does at times sound and feel 'worked to death' hyperactive.

[@JohnsHopkinsMedicine]

Danilo, we're sorry for the delay, but thank you for sharing your story.

[@musichealthandinspiration1113]

We have same condition.. i was born with it when im 6 yrs old i was hospitalized for a week .. its too painful.. frquent vomiting.. now im 36 im healthy.. its just im prone to diarhea.

[@lmcbain38]

Diagnosed with crohns at 14yrs. Then got short bowel syndrome due from surgery at the age of 22yrs. I was on intravenous feedings 11yrs I am no longer on it . I drink alot of ensure it is too painful to eat. Wish I didnt live in daily pain. I raised my sons. I still got educated . Still worked threw out the years up until 2 years ago it is too hard for me now. I have narrowings in the 4ft if intestine I have left all together with LG and sm intestine. Wish I didnt have so much pain . Sorry to complain

[@KeeIowa]

I hope I don’t get that, once my operations are done I will have 3 feet. 😢

[@KathleenMcKay]

My daughter has 91cm bowel left after a catastrophic event 4 yrs ago. She has half of her mid traverse and her decending colon left. We are in NZ. We are now having medical issues many are trying to help with. What is my primary concern is a dark green bile coming back up the feeding tube. The liver has been ruled out as an issue but we have constipation issues. Do you have further research I can access please as my child also has trisomy 18 and is 11 years old now. I'm proactive in both conditions but when the experts look to me to advise I'm a little lost. I am pushing for real foods which will happen once we get passed hospital policy relating to realfoods and gtubes. We need high calories in low volumes as Brennagh cannot tolerate the recommended 1400mls of peptisorb...our last option of many products. Any direction would be greatly appreciated. Thanks.

[@JohnsHopkinsMedicine]

Kathleen, Apologies for the delay and so sorry to hear about your daughter. Hopefully, the below links are helpful: bit.ly/2oYsL4F bit.ly/2o6NAal bit.ly/2zO3kFt

[@queensnailstudiokch6284]

If a patient's has only 20 CM of bowel, can he/she survive? How long can he/she lives?

[@thedemonlord8685]

with modern medical tech, along time, but it will be very restrictive