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

Sclerosing Mesenteritis

What is Sclerosing Mesenteritis?

Sclerosing Mesenteritis is a rare disorder caused when the small bowel's membranes become inflamed and fibrous resulting in an abdominal mass.

 

Sclerosing Mesenteritis is a rare disorder caused when the small bowel's membranes become inflamed and fibrous resulting in an abdominal mass.
Acknowledgement of Sclerosing Mesenteritis has not been added yet.
Prevalence Information of Sclerosing Mesenteritis has not been added yet.
Synonyms for Sclerosing Mesenteritis has not been added yet.
There are no certain causes but recent abdominal surgery has been loosely linked to this disease.
Abdominal pain, at times severe, is usually the first symptom, along with bloating and diarrhea. This can lead to weight loss and sitophobia (fear of food). The symptoms may wax and wane or be constant.
Sclerosing mesenteritis can mimic other diseases such as lymphoma and mesenteritis cancer.
Diagnostic tests of Sclerosing Mesenteritis has not been added yet
Some people are totally asymptomatic and need no treatment. In the early necrosing stage, most doctors do nothing because many people heal and reverse the disease process on their own
Prognosis of Sclerosing Mesenteritis has not been added yet.
Tips or Suggestions of Sclerosing Mesenteritis has not been added yet.
References of Sclerosing Mesenteritis has not been added yet.
Weight loss Created by Sharon60
Last updated 16 Jan 2015, 03:36 PM

Posted by lisas
16 Jan 2015, 03:36 PM

She does not see Dr. Pardi up there. Dr. Schaffner has consulted with us and her docs on her since 2008 when she was diagnosed. She was in critical care and was to be life flighted to Mayo that following day . . Mayo refused her due to her age . . . She's over 18 now . . but there's nothing they can do for her up there that they can't do down here and I do speak with Dr. Schaffner (another of the SM guys at Mayo) . . Drs. Pardi & Schaffner in MN, Pico in FL Mayo, and Dr. Eli in Chicago are the SM people in the U.S. i'd have to say they have some pretty amazing ones here in Oklahoma as well as my kid is still alive and they were very aggressive with her. In seeing some of the others that were treated at Mayo and i can think of one that passed with SM a year after diagnosis that I knew him and his family (we're still in contact with our Sm group) . . . he wasn't given the chances my kid was. Docs read - surgery can make it worse . only do surgery if bowel obstruction, etc. . . well, seeing it with 2 families up there . . and on one 1 they did do 1 surgery . .but wouldn't do anymore . . (we keep taking my kiddo's ostomy sites up higher above add'l SM stuff) . . she's had many bowel obstructions! :(

Posted by lisas
16 Jan 2015, 03:31 PM

Sharon - Thx for responding. We have a pretty amazing group with over 80 people in it now with SM and/or MP from all over the world. Would love to add you to our group if you like . . i sent you my email before as well lisas444 @ yahoo . My kiddo hasn't responded to most of the SM treatment . . she's still alive though. She's had 17 abdominal surgeries now, has ostomy placement, TPN dependent for over a year now . . . the SM also affected the right ureter as well (she's had multiple multiple multiple and can't say that enough how many times) but bowel obstructions . . . she's inpatient frequently and this past year has been in more than 50% of the year again . . . she's been on ALL the meds out there to treat SM and is no better. She's had a pretty aggressive team of docs who have been amazing and haven't quit on her. She's just started a new drug that was used by one other SM person in the UK that was a 29 year old girl . . . I got the drug from drug manuf to use it on her here . (insurance won't pay as not FDA approved and experimental) . . . she had 1 treatment so far and then ended up in the hospital with 2 sepsis rounds back to back and endocarditis as well developed (over the last 3 months). She's starting the 2nd infusion today . . .

Posted by Sharon60
14 Jan 2015, 11:25 PM

I'm sorry to hear about your child, so young, being diagnosed with this and to such an extent! Have you consulted Dr Pardi at the Mayo Clinic? He is considered to be the most knowledgable physician in this country on SM. I seem to have hit a plateau for now. For the past three weeks I have only had five days where the pain, bloating and diarrhea ha been bad. I have changed my diet to no processed foods or dairy and very little fiber. I make my own yogurt with soy or almond milk now and I seem to tolerate it well. I am a physician and with the multiple disease processes, I have had to retire on disability. I have cryoglobullinia, due to the hepatitis C I contracted during my intern year, which is the worst. I get chemo therapy every six months for that after it finally caused kidney failure. At least my kidneys got better but there's no cure. Then I got mononeuritis multiplex, also caused by the cryo. I probably have a lot more knowledge than the average doctor, lol. I end up giving them the names of articles and research. Now I'm researching SM. I've gotten really good at medical research.

View Full Thread (3 more posts)
Community External News Link
Title Date Link
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 SM
I have cryoglobulinemia, mo...
I have been living with Sc...

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

Weight loss

Created by Sharon60 | Last updated 16 Jan 2015, 03:36 PM


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.