Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Short Bowel Syndrome

What is Short Bowel Syndrome?

Short Bowel Syndrome is a disorder causing malabsorption due to the surgical removal of the small intestine or a congenital short bowel.

 

Short Bowel Syndrome is a disorder causing malabsorption due to the surgical removal of the small intestine or a congenital short bowel.
Acknowledgement of Short Bowel Syndrome has not been added yet.
Prevalence Information of Short Bowel Syndrome has not been added yet.
Synonyms for Short Bowel Syndrome has not been added yet.
Cause of Short Bowel Syndrome has not been added yet.
Symptoms for Short Bowel Syndrome has not been added yet.
Diagnosis of Short Bowel Syndrome has not been added yet.
Diagnostic tests of Short Bowel Syndrome has not been added yet
Treatments of Short Bowel Syndrome has not been added yet.
Prognosis of Short Bowel Syndrome has not been added yet.
Tips or Suggestions of Short Bowel Syndrome has not been added yet.
References of Short Bowel Syndrome has not been added yet.
What is Richard Created by what
Last updated 21 May 2016, 04:20 AM

Posted by what
21 May 2016, 04:16 AM

It would have been nice if the of sign up page's first info box was titled 'login name' instead of just 'login'. I just put what, not knowing what they really were needing Anyways, my bowel condition is a bit beyond SBS. I only have 3 feet of jejunum and my stomach. A foot of it does not work well. I had an ileostomy for 25 years before a butcher killed the rest of my small bowel. I have the shorten bowel since 1998. I say I am an expert for sure. A resident internist to be doc says he learning from me things that are not taught in the university. I left TPN dependency long ago due to a defunct medical center. I get hydration infusion twice a week. I have a tweaked highly individualize regimented diet that is not so regimented anymore. So, hi everyone. I hope to learn and share here. night, night Richard

help please Created by elymar1019
Last updated 4 Aug 2009, 03:28 AM

Posted by elymar1019
4 Aug 2009, 03:28 AM

daisy can you please email me i would really like to have a nice talk with you and btw my baby girl has had great doctors i might be able to give you some helpfull information.

Posted by elymar1019
4 Aug 2009, 03:25 AM

Elymar1019@yahoo.com if you have short gut and want to share ur story

Community External News Link
Title Date Link
Jaguar Health Announces Submission of Clinical Trial Applications for Crofelemer for the Rare Disease Indications Microvillus Inclusion Disease (MVID) and Short Bowel Syndrome (SBS) in Europe 05/10/2024
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

I have only 3 feet of bowel one of which is bad.

 

I am 70 years of age. Male. Do life alone except for treatment center staff, unclose son and unclose sister.

 

I am being patient waiting...
When I was less than a day old, I had 6" of small intestine removed. I had upstructed about 2 weeks later and was rushed back to the hospital for more surgery. In 1970, I couldn't even drink a...
I was born with omphalocele and and have had about 14 surgeries and I know am on TPN and have a short gut syndrome, malabsorbtion, malnutrition, pernicious anemia, hypokalemia, and malrotaion of my...
My baby girl was born Feb 22 2008 with jejunal atresia/ short gut/ applepeel / my email is Elymar1019@yahoo.com if anyone want to share or their story or ask me any question.

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

What is Richard

Created by what | Last updated 21 May 2016, 04:20 AM

help please

Created by elymar1019 | Last updated 4 Aug 2009, 03:28 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.