29 Truths About Living With Short Bowel Syndrome

The truth about short bowel syndrome is from the patients’ and caregivers’ own words: a firsthand account of what life is like with short bowel syndrome.

Nearly one in two Americans (133 million) live with chronic conditions and illnesses, such as arthritis, multiple sclerosis (MS), diabetes and lupus. Then there are the one in every 200,000 Americans that live with a rare disease or disorder – such as short bowel syndrome, among other genetic and chronic conditions. Their symptoms – like pain, fatigue, muscle aches and weakness, disturbances in vision, cognitive difficulty, intestinal distress and memory loss – aren’t always visible to the naked eye. Harder still, friends, family and coworkers can’t always recognize a sense of loss, loneliness and isolation. Despite the obstacles those with health conditions must overcome on a daily basis, experts agree that, yes, people living with chronic conditions can live full and meaningful lives, regardless of the severity of their condition.

When we see someone in a wheelchair or using a crutch or oxygen, we know that they need that device to help supplement their health. Yet when people see us wearing backpacks, or alarm pumps go off, it is not as well understood, and some say we should “suck it up” and “move on.” Others are more compassionate.

Back in 2014 I asked the short bowel syndrome community, If they could tell the public one truth about SBS, what would it be? These truths give a firsthand patient and caregiver account of what living with short bowel syndrome is really like personally, and not just medically.

So, here is the truth of short bowel syndrome (SBS) from those who live it:

1. “The truth about living with SBS is that it’s a time-consuming disorder. Time spent menu planning, time spent on TPN, time spent in the bathroom, time spent feeling lousy, time spent waiting for lab tests and home health supply deliveries, time spent at doctor appointments or in hospitals, time spent on the transplant list, time spent explaining to people what’s wrong with you even though you know they’ll never understand, time spent worrying if you’ll be OK, time lamenting over those who judge you, including teachers, bosses, peers, family and friends, time spent praying to God for answers and help to make it through another day…”

2. “Being a mother, I do almost everything for my 2-year-old daughter with SBS (the people at Children’s Hospital Boston are excellent in teaching us parents how to care for our children so we don’t feel our privacy invaded by nurses!). The thing that strikes me is how immune I am now to the disgustingness of poop! I have to watch myself around others who don’t want to hear about that aspect of how she is doing! Seriously though, normal body waste functions should never be ignored by those with SBS, any illness or if you’re perfectly fine. It’s taught me to be perfectly comfortable talking about grosser aspects of the body.”

3. “Diarrhea and gas are a normal part of your day. You cannot be ashamed or embarrassed. My 9-year-old is quite the trooper and although some kids can tease, she couldn’t care less.”

4. “It is about having faith, trust and determination. It’s about never giving up even when you feel there is no hope. It’s sleepless nights, more diaper-changing than you ever imagined possible, diaper rashes that weep and bleed and even at times have skin missing. It’s about watching every calorie intake and praying they absorb even just a small amount. It’s a disappointment to find out your child lost weight again even when there seems to be nothing more to lose. It’s trusting doctors to find the right combination of TPN and/or continuous feeds. It’s an extremely tedious and stressful way of life. Just when you think you have it all figured out, you get thrown a curveball and have to start over again.”

5. “It can be difficult at times. You want to join family and friends for different things and you can’t because you are stuck in the bathroom. If you are at a gathering or out with others you have to make sure you drive yourself so if you have to leave you can. You have long nights because you ate the wrong thing and now you are paying for it. Then to top it off if you don’t have a sphincter muscle like me you don’t eat at all before you go anywhere and take Imodium to control the diarrhea. Then you get dehydrated. I do not have a feeding tube or anything, but my condition is getting worse as I am getting older.”

6. “The truth about living with SBS as a parent is…you only thought you were strong before, then along comes this monster that tests absolutely everything you have, and makes you prove you can be even stronger.”

7. “As a parent, having an SBS child, it is important, in my opinion, to teach them that even though they have this insidious disease, they are just as capable as anyone else of accomplishing their goals. Setting small steps toward their goal is the key. It may not be in the same fashion or the same time frame, but with determination and help, it can be done.”

8. “As a mother of an 8-year-old boy who has had SBS since day one, there have been many hurdles along the way with potty training and diets, but I think the biggest hurdle has been the bullying from other boys because he is so small.”

9. “The truth about living with SBS is that you will realize that so many people around you take so many things for granted. The simplest milestones, activities and developmental stages are now challenges, hurdles and stumbling blocks. Your struggles are invisible and all too often overlooked by others, all the while your world is revolving around these personal crisis each and every day.”

10. “In my opinion, the truth about living with SBS is the only ones who understand what we go through are others with SBS and the devoted parents (caretakers) of these kids who got nailed with this.”

11. “The real truth for me is that it’s hard work living with SBS. It’s like having a full-time job just having to make myself well by reading my body and identifying what it needs. Whether it’s a bag of saline or all the things I lack. I have almost become a pro at reading my body and knowing what I need. The toilet is where I spend most of my time, and I have to put up with feeling wiped out, having sores around my stoma, getting acid burns, leakage and more, but I try to live a normal life as best I can and I’m glad I’m still here.”

12. “The truth about living with SBS is it’s a pain in the butt… What works for one may not work for another person living with SBS. You try and learn what works for your body and what doesn’t. As a mother it is often heartbreaking to watch your child experience pain and frustration from feeling lousy to multiple needle pokes and procedures.”

13. “Living with my 7-year-old with short gut/short bowel syndrome, one thing that stands out for me is the roller coaster ride along with the highs and lows from one minute to another.”

14. “It’s not easy. My son has been through seven major surgeries and 50 hospitalizations. It never gets easier seeing him hurt or fearful. My one thing I would change if I could would be that he wishes to be normal and not be picked on by others. It’s not fair. If I could I would take it all for him.”

15. “Living with SBS is a lifelong learning process. Even on my sick days, I know this too shall pass. Suffering does not last forever. SBS can be lonely and embarrassing.”

16. “It’s a living hell…you never appreciate the little things, like going to the bathroom like a normal person, until you lose that ability. That every minute of every day revolves around this disease…hook up IV fluids, union, hook up TPN, always take supplies, always need extra clothes…etc. The smallest of tasks becomes monumental!”

17. “It is something that no one else (except us who have it) can fully comprehend.”

18. “The truth about living with SBS is, you really are alone when it first happens. The doctors talk in circles and the nurses are behind them trying to help us understand. ‘I just woke up hooked up to this bag. What does that mean, and is it bad?’ I can’t eat this or I can’t eat that, and why does that food taste so bad? NPO means no food, drink this broth and swallow that jello. I can’t even have carbs or drink my Mellow Yellow. Not to mention the emergency room visits, when you get to know the nurses on a first name basis. Dehydration for the first five months, low potassium and magnesium for more months to follow. My kidneys are near failed and my sight is near gone.”

19. “There are lots of shots – but not the fun kind!”

20. “The truth is your life has just taken a horrible change. You are about to find out just how tough you are.”

21. “Going out is like a military operation: reducing input to reduce output, medication for the day, mini stoma supplies in bag along with last gastro clinic info letter, maxi stoma supplies (including change of clothes) in the car, toilet strategy, time limit on activity or keep rest of week free to rest. I plan for the worst to enjoy the best!”

22. “Your life will never be the same, but you always surprise yourself as to how strong you have become and for those who never know anything different, it’s just how your life is and you just go with the flow.”

23. “The truth about SBS is…it sucks! Why does it suck? As a 9-year-old boy, he should be free and full of life, but he can’t eat anything at all without becoming sick. Instead he carries a backpack, a medical backpack that holds his three plus liters of fluid 18 hours a day, seven days a week, and his IV home pump that he would otherwise would remain in a Children’s Hospital tethered to an IV Pump. He is unable to attend school due to him being listed on a transplant list awaiting a stomach/small and large intestine and liver transplant for the fear of germs. He is unable to play in sports due to his ostomy bag/IV backpack and tube. He is unable to submerge himself in a swimming pool on a hot day in summer or take a bath or shower for fear that his central line port and site might become wet. As my child grows, his childhood is passing him by without my ability to stop time so that he can have the life experiences we all take for granted. His older brothers and family make every and take every opportunity we can to compensate in other ways for some of those he has never experienced. However, he still just wants to be a ‘normal kid’ with no limitations.”

24. “A truth of SBS is never needing to grunt while sitting on the toilet.”

25. “Truth is…as my sister says…it makes you as strong as an ox – no matter how tiny or skinny you are!”

26. “You can never plan a couple of days ahead to do anything you don’t know if you will be able to. I feel like I am cut out of my family’s lives because I don’t feel like going and doing what they do. We live at the beach. They are on the water a lot with the boat. Hard to find a restroom on the Intercostal Waterway.”

27. “After you think you have the hang of things, making vacation plans have to be around finding the right coolers to store TPN until you get to
your destination. More stress is actually remembering your toothbrush this time just to forget syringes (ugh).”

28. “Not knowing what the future holds. It causes me so much stress and anxiety when I even think about the future because I have no idea what may happen. It causes me to pull away from friendships and feel a lot of guilt in my relationship with my boyfriend. We are in a pretty serious relationship and have talked about marriage and stuff but I won’t be able to have kids of my own and am terrified of leaving him a widower at a young age if something were to happen to me.”

29. “And finally… the uncertainty.”