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Posted by Margaret Shepard (@Margaret_Marie) · Dec 13, 2012

Research forges path to effective treatment for sclerosing mesenteritis

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."

Carol Bolton Darrell Pardi M.D. Matthew Clark PhD sclerosing mesenteritis


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Amy (@amynatoli67) · Dec 26, 2014 · #

I have been suffering from SM for over a year. I couldn't handle taking the prednisone, it made me feel terrible. I have gone to the mayo clinic in Jacksonville. This disease is horrible. My stomach is constantly bloated and I'm in a lot of pain. How does one manage he disease? It only seems to be getting worse.

Joel Streed (@jstreed) · Dec 26, 2014 · #

Hi Amy, Sorry to hear about your continued struggles with SM. Here is a link to some information which maybe helpful:

Amy (@amynatoli67) · Dec 27, 2014 · #

Thank you Joel for he information. Has anyone tried prednisone with positive results? I just could not take that medication, it had more side effects than I could handle. What other medication is effective without side effects? My doctor mentioned imuran if prednisone wasn't helpful.

Peggyanne (@peggyanned) · Sat, Feb 7 at 3:23am CDT · #

Amy, I have been having really bad RUQ pain and nausea for 3 months. I've had all kinds of tests. I just read my CT report that I had done at the University of Michigan. It says mild Mesenteric panniculitis. It doesn't feel mild to me...I've been so sick I've lost 25 pounds. I haven't had a follow up with a GI doctor yet and my family dr called and told me the CT was fine??? I am positive this is my problem...I have all of the symptoms....

Amy (@amynatoli67) · Sun, Feb 8 at 11:21am CDT · #

Hi Peggyanne,

My MRI performed at the Mayo clinic showed mild sclerosing mesenteritis. And like you said it feels more than mild. You know your body and it is telling you something is wrong. Stay on top of finding some doctor that will help you with your disease. My doctor was going to put me on imuran. What has your doctor recommended for your disease?

Amy (@amynatoli67) · Sun, Feb 8 at 11:24am CDT · #

And also would it behoove you to have a MRI instead of a ct scan? An MRI will show soft tissue and any inflammation. Plus I had blood tests showing my inflammation was elevated 3 times the norm.

Caroljean2852 (@caroljean2852) · Thu, Feb 19 at 5:36am CDT · #

I was recently diagnosed based on ct scans. I live in a small area in upstate NY and need to find someone for a second opinion. I am scheduled to see a surgeon next week. I don't even know what to ask...scared

LS4 (@lisas444) · Wed, Apr 15 at 2:57pm CDT · #

Hi carol - i sent you an email in response to the one you sent me on yahoo! :) Lisa

Mary E (@marezdotes) · Thu, May 7 at 3:43pm CDT · #

Hi Carol,I was diagnosed with SM officially the end of Dec. after the first CT scan indicated that I had it, but the doctors didn't want to accept that diagnosis.  I've been having daily symptoms of nausea, pain, and constipation since August of 2014 and have had 3 major bouts of writhing pain that should have landed me in the hospital.  I saw a GI doctor in NC who is reluctant to treat me because of the side effects of the drugs and his belief that the CT scan doesn't look" bad" enough to begin treatment.  I have edema of the mesentery, fibrosis, and multiple enlarged lymph nodes the largest few measuring 8 mm per CT and MRI studies.  I am scheduled to have a second opinion with another GI doctor who is talking about trying tricyclics to block the pain.  I have read everything I can on the internet and am anxious to try something to stop the progression and the symptoms. Short term prednisone did nothing to allay any of my GI symptoms.  Do you have any new resources and/or knowledge of someone who is treating SM in the Pittsburgh, PA area, or the Durham, NC area?  I would appreciate any resources that you may have as well.  Thank you.  MarySiha
Since the above email was sent, I have been to another GI doctor after waiting 2 months with symptoms and a near trip to the hospital with what I think was another partial small bowel obstruction that lasted about 3 hours of intense pain.  This doctor told me he really couldn't help me and I should go to a Rheumatologist associated with a big university. He is treating me with Elavil to block the GI pain and has given me Zofran for the nausea.  I am so frustrated and don't know where to turn next.  Please advise me.   

Mary E (@marezdotes) · Sat, May 9 at 2:05pm CDT · #

Since my last post, I saw another GI doctor in PA who is treating the symptoms to block he pain and control the nausea, but wants me to see a Rheumatologist affiliated with a university. What kind of doctor treats SM? Which drugs are the jump off drugs to treat this disease? Please advise.

Mayo Clinic (@mayoclinic) · Sat, May 9 at 10:40pm CDT · #

While we cannot make specific treatment recommendations through this correspondence, here is some general information that may be helpful: If you would like to seek help from Mayo Clinic, please call our appointment office at: 507-538-3270. Thank you.

Mary E (@marezdotes) · Sat, May 9 at 2:25pm CDT · #

Who treats SM at the Mayo Clinic in MN? How many patients have been seen there? How often do you need to be seen?

Mayo Clinic (@mayoclinic) · Sat, May 9 at 10:47pm CDT · #

We will make an inquiry in to your questions and if we can address it through this medium, we will do our best to follow up. Thank you.

Mayo Clinic (@mayoclinic) · Mon, May 11 at 8:24am CDT · #

Dr. Pardi responded as follows: "At Mayo, SM is generally treated by a gastroenterologist. In our division, there is a team of doctors in the General GI clinic who sees these patients. Collectively, we have seen over 200 patients with this diagnosis. The frequency of follow up varies greatly based on the details of an individual case and the ability of local doctors to provide some of the follow up needed after consultation at Mayo."

Mary E (@marezdotes) · Mon, May 11 at 5:17pm CDT · #

Do you have any closer affiliated clinics to either the Pittsburgh, PA, or Durham, NC regions?