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A Patient’s Guide to Managing a Short Bowel

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Short Bowel Syndrome Patient Stories

The following stories describe the experiences of people living with SBS and are here to help you understand that you are not alone. Read stories of people living with SBS and share your story.

“My diet is strictly regulated and I cannot use any sugars.”

Unnamed Female Story

I’m a 70-year-old female. I had recurrent small bowel obstruction, and over four years ago had a resection of my jejunum to right colon, including my ileocecal valve. After the operation, I had 20% of my small bowel left. I am not taking total parenteral nutrition (TPN) or enteral nutrition (EN). My weight dropped to 83 pounds three months after the operation but has climbed to 100 to 102 and stabilized.

I take a variety of antibiotics to fight off small intestinal bacterial overgrowth, which has been my main problem. I'm also taking 240 mg of codeine daily, along with monthly B12 shots. I have been having problems with extreme pain from the bad bacteria. I take two liters of CeraLyte® 70 a day as my only liquid drink. My diet is strictly regulated and I cannot use any sugars.

My quality of life is horrible. My bowel movements average nine per day, sometimes as many as 25, and are loose for the most part. I have tried the available probiotics and Greek yogurt to help me with good bacteria, all to no avail. I am very thankful that I do not have to use TPN or EN but wish that I could have a better quality of life. I am glad to share my experiences with anyone.

CeraLyte® is a registered trademark of Cera Products, Inc.

“I have managed to have a part-time life … I am hoping to find the right level of support.”

Cath’s Story

I was born with ulcerative colitis in 1969 and was very ill for most of my childhood. In 1983, it was decided that I should have the j-pouch surgery (ileal pouch reconstruction), as there was a high risk of cancer. I had my colon removed. I had to have a temporary ileostomy, and then I had it reversed.

For four years, although I had problems, I flourished and was well and had the most normal existence I had ever had. When I turned 19, I developed blood poisoning and almost died. I was not expected to leave the hospital. I had all but 150 cm of small bowel left, as well as no large intestine and a permanent ileostomy.

Since that time, I have managed to have a part-time life; however, it has really compromised my life and has given me great hardship—mainly due to the condition not being treated correctly or understood by the people who are supposed to provide support. I am not on any real medication except for Imodium®, which I take a lot. I am hoping to find the right level of support medically and pastorally in the UK. Until this condition is understood and the correct level of support is in place, people with this condition lead very challenging lives.

Imodium® is a registered trademark of McNeil-PPC, Inc.

“SBS has completely turned my world upside down, but since this, I am now married to my best friend and my companion.”

Meghan’s Story

On January 1, 2007, I was admitted to my nearby hospital for abdominal pain after computed tomographic (CT) scans and tests were all negative. I was admitted for further testing. Two days later, I was on life support and in complete organ failure. By the time they scoped me, it was too late. My entire intestines had gone gangrenous. I underwent three massive bowel resections in four days and was in a coma for three weeks. After I woke up, we discovered things were not getting better, and I started TPN, G-tube, etc. The doctors had given up … better yet, I was only 27 years old.

I was being handled by the three chiefs-of-staff at this very prominent hospital located here in Virginia. Finally, my one gastro guy said to us, “Get out. There is no hope here.” And well, we listened. We had narrowed down our decision to a specialist in Switzerland, and one of the leading specialists on SBS at a hospital in Georgetown. My gastro guy begged us to try Dr. L at George Washington University. Thank God we did. I underwent four more resections with him there.

Besides being registered on the short bowel transplant list, the fourth surgery was the key! I was released that July and remained on TPN until August. We figured the originating factor was a mesenteric blowout that caused a strangulated hernia. I have exactly 80 cm remaining, colon intact. My problem now is adhesions that are basically attacking my insides. It has been four years now, with no G-tube, no TPN, and an SBS diet created by Dr. Z at Emory University.

I am a one percenter. But I have a deep-rooted passion for all of those who suffer from this. It is a daily challenge, fear, scare, struggle, pain inside and pain for your loved ones. They want you to be so strong because you look normal, but it’s all a show. I am now dealing with colon challenges like motility. My main challenge is adhesions. I remain on Coumadin® and have kept my food and vitamin journal to learn what is best for my digestive system. My immune system will always be compromised. Best thing that has happened to me yet is Culturelle® two times a day!

SBS has completely turned my world upside down, but since this, I am now married to my best friend and my companion. My triumphs are that I am no longer on TPN, no G-tube and my specialists say that I should be the poster child for SBS. I am so glad I discovered this site. I have been looking for one for years now, and I am always willing to speak and help others with this daily struggle. I guess the way I see it is, thank God. God gave this to me instead of someone else—sacrifice.

Coumadin® is a registered trademark of Bristol-Myers Squibb.

Culturelle® is a registered trademark of i-Health, Inc.

 

“Short bowel syndrome is like having a motor in your stomach that never stops, and as it runs, it grinds the sides of your gut.”

Elizabeth’s Story

I am the very first infant that survived necrotizing enterocolitis from birth. I am now 35 years of age and therefore the oldest survivor of short bowel syndrome. I reside in Amarillo. I made the newspaper at four months old. It read “Four-Month-Old Baby Finally Goes Home.” Mother’s milk is what saved my life, and thanks to six women in Amarillo, I got mother’s milk for a solid year.

I have had more than half of my small bowel removed, and I sustained three major operations at birth and one in Dallas to remove gangrene from the resection. Now at 35, I have irritable bowel syndrome and celiac disease that preceded my SBS. Short bowel syndrome affects your life and the lives of your family, also. I hate that I go to the bathroom more than 20 times a day, or I have kidney stones for weeks. Short bowel syndrome is like having a motor in your stomach that never stops, and as it runs, it grinds the sides of your gut, causing sheer and utter pain.

I am lucky to be alive to tell my story. I just hope that as my intestine continues to struggle, I can help others with remedies and things I do to help the agony and pain I endure with this condition. I am currently seeing this wonderful doctor who infuses me with nutrients and immune support therapy. I take no prescriptions. I maintain a good diet and see my doctor every week for my intravenous (IV) therapy. That’s all a person with this condition can do—have a good doctor who can help you.

 

“There is hope … Short bowel syndrome is a very serious condition, but it is one that can be well managed if done correctly.”

Andy’s Story

My name is Andrew, “Andy,” and I have lived with short bowel syndrome for my entire life. I am 26 years old, and I live in Lincoln, Nebraska. I was born in 1986 to Leo and Barbara. At 38 weeks, my mother discovered I had stopped moving and went to see her OB/GYN. After that appointment, my life began.

There was something wrong. Surgeons at the time could not determine what. After some thinking, the surgeon who was on my case did exploratory surgery and discovered that I had three knots called volvuluses in my small intestine. The surgeon decided to take out the dead small bowel and reconnect the remaining living parts, for a total of 10.2 cm, or 4 in. A normal 40-week infant should have 150-300 cm of small intestine.

My parents were told I had 24 hours, they should make funeral arrangements, and I was baptized immediately. After the small bowel resection and a confirmed diagnosis of one of the worst cases of SBS ever seen at the time, I was started on total parenteral nutrition and enteral feeding to help deliver supplemental nutrition because of the degree of malnourishment, as a result of the small bowel only being 10.2 cm.

We moved to Lincoln, Nebraska from Columbia, Missouri in 1989. When I was starting to once again fail in health, we came to Nebraska to find a gastroenterologist. Throughout my school years, I struggled because I would go in and out of the hospitals or be sick on a frequent basis. My classmates had an idea of what was wrong with me, but they really didn’t know what SBS entailed, which made it difficult to fit in.

I was able to play some sports—soccer, t-ball and baseball, and eventually when I got to high school, I ran a year of cross-country. Then, I called it quits on my sports career, knowing it probably didn't do my body any favors by burning off the much-needed calories. I often struggled in school. I found it difficult, so I took advantage of the resources made available to me. I graduated high school in 2005 and got accepted into nursing school. After two years of nursing, emergency medicine and surgical technology courses, I settled on a business degree and started thinking about where I wanted to go next.

Today, I am a college graduate, and an entrepreneur who has started his own business. There is hope! I knew a lot about short bowel syndrome. In fact, I was interviewed several times about the condition SBS and my personal experiences before the idea sparked in my head to create a foundation for the patients and caregivers of SBS. The Short Bowel Syndrome Foundation was established to help educate, support and advocate for those with short bowel syndrome. Our vision and mission is to empower patients to live fuller lives, creating a lifeline of hope. In addition to providing education and support materials and inspiring those who come to the site, there are our social networks for guidance and knowledge, so that management of care becomes easier.

That is a little about myself, and I am always willing to share more if asked. Short bowel syndrome is a very serious condition, but it is one that can be well managed if done correctly and with frequent follow-ups with your gastroenterologist. There is no reason why you could not live a pretty normal life!