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December 13, 2012

Research forges path to effective treatment for sclerosing mesenteritis

By Margaret Shepard, Communications Specialist
Carol Bolton outside Mayo Clinic in Rochester, Minn.

Carol Bolton enjoys a breath of fresh air between appointments outside Mayo Clinic in Rochester, Minn.

With more than three decades of experience as a nurse and nurse manager, Carol Bolton of Exeter, Calif., was acquainted with most medical conditions. But in 2004 when she began experiencing abdominal pain along with episodes of diarrhea or constipation, she was baffled by what it could be. Most likely, she thought, it was related to grief over the abrupt death of her husband of 35 years.

But when the pain persisted and grew worse, she saw a gastroenterologist, who ordered a computed tomography (CT) scan. Carol was shocked to learn that a mass (about the size of a quarter) had been found in her mesentery. The mesentery, a membrane that anchors the small intestine to the back of the abdominal wall, is comprised of delicate folds or leaves filled with blood vessels and nerves.

Although she had not had a biopsy, she was told there was a possibility that the mass could be cancer of the small bowel. "I left the doctor's office devastated," says Carol. "I went to the car and cried. I looked healthy, and I wasn't convinced I had cancer."

She immediately contacted a surgeon in Fresno, and had a biopsy. The biopsy showed no cancer. Still, to alleviate her symptoms, the surgeon recommended the mass be removed.

Even with surgery on the calendar, Carol was not convinced it was the right course of action.

First choice for second opinion
"After more research and discussion, my surgeon and I agreed that I needed to get another opinion," says Carol, whose first choice for a second opinion was Mayo Clinic in Rochester, Minn. In 1977, Carol had brought her young daughter to Mayo for surgery to remedy a rare birth defect. This prior experience was the deciding factor in promptly scheduling a Mayo Clinic appointment.

At Mayo Clinic, part of diagnosing Carol's condition was ruling out what it wasn't. "It takes a team of skilled radiologists, pathologists and gastroenterologists to confirm a diagnosis," says Darrell Pardi, M.D., a Mayo Clinic gastroenterologist. Following CT imaging and analysis of a biopsy sample, Dr. Pardi gave Carol a diagnosis: sclerosing mesenteritis (SM).

This rare disease affects the small bowel mesentery with chronic, fibrosing inflammation. Masses that form are known to masquerade as cancers, and have also been associated with pancreatitis and intestinal fibroids. Growths may appear as single or multiple masses, or as a general thickening of the mesentery.

Erratic symptoms also make sclerosing mesenteritis a challenge to diagnose. While many people experience abdominal pain, bloating, distention, diarrhea and weight loss, others with the disease live with no symptoms.

Rare research
Although the first known case of sclerosing mesenteritis was reported in 1924, research has made few strides toward understanding its underlying cause.

"SM has been difficult to study because it's so rare," explains Dr. Pardi, who conducted a research study of identified cases of SM diagnosed at Mayo from 1982 to 2005. The study — the largest to date anywhere — examined 92 cases.

Although the research did not uncloak the cause of sclerosing mesenteritis, several trails for further research were identified. For one, a prior history of abdominal surgeries was reported in 35 percent of the patients studied. Carol, for instance, had an appendectomy at age 21, and three C-section deliveries. These and other findings drive research.

Most importantly, the research yielded a treatment protocol that has shown to be effective in treating SM.

A treatment that works
Experience has shown that understanding each patient's unique manifestation of sclerosing mesenteritis is essential to staging medical treatment.

"My treatment began with an initial burst of prednisone for several months, which I was tapered off of," says Carol. "Also, I have been on raloxifene (a drug used for post-cancer care and osteoporosis) since my diagnosis in 2005."

The most widely prescribed medical therapy for sclerosing mesenteritis is tamoxifen (known to help prevent the recurrence of breast cancer), typically used in combination with prednisone, which has the effect of easing pain by settling inflammation or causing scars to regress.

Surgery to remove obstructions or growths is another option. The growth of masses is a common feature of SM. Masses frequently tether themselves to nearby bowel tissue, or retract and scar the delicate folds of the mesentery, making patients prone to bowel obstructions, which require surgery.

One of the more serious complications of SM is the growth of masses that encase the mesenteric artery. When this occurs special stents may need to be inserted to keep the artery open.

Finding her own way
Thus far, Carol's SM has been managed with medications. Following her diagnosis and initial treatment in 2005, she resumed her work as a nurse administrator despite pain that she describes as sometimes "excruciating."

"Learning to manage your pain is crucial," says Carol. "My pain is mostly associated with digestion and fast food transit into my small intestine, usually within an hour after eating," she says.

To stave off pain, Carol has learned a new way of eating. "I eat two meals a day, in smaller portions, limiting myself to simple carbohydrates and avoiding fibrous foods. I take supplements to compensate for the nutrients I miss in vegetables and fruits.

"There's no one answer to how to change diet," says Dr. Pardi. "Patients learn to listen well to their own bodies and identify those foods that trigger discomfort."

"I live in spite of the disease"
Carol admits that her new way of eating has changed the experience of dining out, a mainstay of her social life. "You make adjustments that can only be made with the help of a support system," she insists. "You can't do it alone. I have a friend who I can call even in the middle of the night. I've learned I can live within certain limits and enjoy a good quality of life."

As she focuses on managing the symptoms of SM, Carol continues playing harp and piano and quilting. She is actively involved in an international SM Web site to encourage greater awareness of the disease and especially to offer support to others who live with it.

Hope on the frontier
"I can't ask more from Dr. Pardi," says Carol. "He looks me in the eyes, is warm and interested in how I'm doing. I frequently send him emails detailing my status and I think this helps him in research being done at Mayo. If there's a frontier for SM research, the frontier is here at Mayo. If there's a new treatment that develops, I know I'll have access to it here. My confidence is here, and I am hopeful."

Tags: 5360, Cancer, Carol Bolton, Darrell Pardi M.D., Mayo Clinic, Sclerosing Mesenteritis

This message is for anyone who has been diagnosed with mesenteric panniculitis, also known as sclerosing mesenteritis, who is looking to be part of private Facebook support group called “Sclerosing Mesenteritis.” The group has people from all over the United States and numerous other countries such as Canada, Australia, England, Ireland, Scotland and a few other countries. We network with each other and compare notes on symptoms and treatments and doctors. We try to support and help each other as much as we can. We currently have approximately 235 members with this rare disease. If you are interested in joining, you can email Lisa Schwart from Tulsa, Oklahoma at Lisas444@yahoo.com and she can add you to the group. You can also friend Lisa Schwart on Facebook and she can add you into the group.. Her photo is of two women (herself and her daughter) from Tulsa, Oklahoma. The group is private which means that nothing will show up on your regular Facebook page for your regular Facebook friends to see. This disease is rare and has some horrible symptoms and not many doctors know how to treat it so being in a support group is very helpful. The Mayo Clinic in Rochester, Minnesota has seen the most cases.

COMMENT

To Hoffy from Australia and to Royal from Florida: Please read my message above so that you can join our private Facebook support group called “Sclerosing Mesenteritis.”

COMMENT

JUST recently saw on CT a suggestion of this diagnosis as have had mesentery lymph nodes and issues starting in 2013 seen on CT….hope to find specialist on this condition..saw a site that is called xpertdox I believe for rare diseases….to find per state..

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Missisays7, we have a private Sclerosing Mesenteritis Facebook group that has a plethora of information on the disease, the doctors treating them, and the treatments that are helping with close to 350 people worldwide suffering with this disease. Please contact lisas444@yahoo.com to request to be added to the group.

Liked by missisays7

COMMENT

Thank you!:) Just sent an email….

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Hello, I have a very good friend who has SM; can you pls let me know what are the very best supplements he can take (he has a low albumin and he is anemic), and what foods are safe for him to eat (he cannot tolerate any dairy, or high fructose corn syrup)? He takes probiotics, and I would like to know if it is safe for him to drink kombacha? Thank you very much

COMMENT

Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If your friend would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511).

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with and get advice from others who may have had similar experiences.

COMMENT

Carol, What type of diet do you eat after acquiring SM? I was recently diagnosed about 2 weeks ago and now on Prednisone which is helping with cramps and diarrhea. I am able to eat again. Do you eat any red meat? How about chicken or fish? I understand you should stay away from salads and vegetables. Any help you can give me would be appreciated. If the Prednisone keeps working I will ask my doctor to taper it and begin tamoxifen. Thanks in advance for your help. Jim

COMMENT

Hi Jim,
Unfortunately there is no way to tell you what you can and can’t eat, because it is so different for each individual. I was diagnosed a little over 2 years ago, and it has been a daily struggle, but the best advice any of us can give you is to just eat a lot of natural (as opposed to processed) foods, limit gluten, and eat fresh fruits and vegetables and meats….and you will come to know what you can and can’t tolerate. I was fortunate to have been diagnosed in the Mesenteric Panniculitis stage of the disease so I have been on Colchecine for about a year and a half now and am fairly well under control….but this has unfortunately been a journey of incredible agony and massive weight loss for me….Before I was sick, I was at about 220, and am now at 117.5. I am now mostly struggling with eating enough not to lose too much weight. We do have a Sclerosing Mesenteritis Support Group that I would like to invite you to join. It is an international support group through a private facebook page which you have to be invited into and provided the permissions…..I would like to invite you to it, but I do not know how to give the permissions, so please feel free to contact me on facebook messenger. My facebook is accessible at https://www.facebook.com/elizabeth.bean.71. I will find out how to formally invite you to the page and give you the permissions to access it. The page is a great place to talk about what you are going through, get advice on what works and doesn’t, or just bitch about your doctors, or your day or just hang out with one great big huge family of like people who know what you are going through. Best regards, Elizabeth

COMMENT

Nathan sent you a private msg. Is your wife the one I added privately yesterday? Gave her a few Dallas referrals and one very good one. Sent you my contact info privately.

COMMENT

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

COMMENT

Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You can find more information about sclerosing mesenteritis, including information about diagnosis and treatment at https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/symptoms-causes/syc-20355087.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

COMMENT

Does anyone have experience with chronic diarrhea as a symptom of this disease?

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440 people all across USA and several other countries in our private group/forum. Much networking happening and also working with the leading professional on mesenteric diseases. He’s also with us in our group. Pls find me via email or in fb. My contact info is on My profile here. Or Lisa schwart in Tulsa Oklahoma. Daughter diagnosed with SM at age 14 and has had 19 abd surgeries as a result of because of multiple bowel obstructions. Networking between your State or country is offered, plus wonderful friendships and support offered.

COMMENT

My husband is newly diagnosed with Mesenteric Panniculitis, he is have horrible pain, which started mostly at night after he laid down, now it is affecting his day to day and job performance. He has a history of Thyroid Cancer, and total thyroidectomy, high blood pressure, and an abdominal surgery for umbilical hernia, 7 years ago. I just want him to feel better. Can anyone suggest treatment in Arkansas?

COMMENT
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