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December 13, 2012

Research forges path to effective treatment for sclerosing mesenteritis

By Margaret Shepard
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

Hello,
I am in Michigan and your story sounds somewhat like mine. The docs are
going in between Mesenteric Panniculitis and retractile Mesenteritis. I
have just finished the paperwork on getting a referral to U of M in Ann
Arbor. I hope to get a call in a few days to schedule one.

My PCP diagnosed me with RM and my GI is not convinced about although my
MRI came back with indications of MP. My GI fully admits she knows little
about how to treat me regardless and wants me to go to U of M. I have had
a colonoscopy (came back fine), an endosocopy (came back fine), two MRI’s
(upper and lower), the Lower MRI is what indicated MP. So I am hopeful
about finding someone with a clue at U of M.

My PCP does not have a clue what to do as I am obese as well and her
solution is to lose weight, which I have been unable to do since this
diagnosis. I am down to half liquid diet and eat very little and I
exercise! They just won’t listen! Anyway, I just want you to know how
helpful this group has been to me. I understand your reluctance to not
have a lot of people find out, for me it’s just because it’s just too hard
to explain to anyone…lol.

I’ve been on Prednisone (3 rounds) and it’s the only thing that’s helped,
but I’m not on it anymore. I also have anxiety issues and take Klonopin as
needed.

I just wanted you to know that this group has been extremely helpful in
talking to people who understand the craziness of this disease as well as
understanding that many of us have multiple problems. Mine is swelling and
pain, with the swelling being the worst of it. I’m getting sick of it and
my patience is wearing thin with doctors who are not listening.

I also wanted to reassure you how private this group is. Nothing shows up
on any feeds and you don’t have to become friends with anyone except Lisa!
Some of just read the postings, some post, but all of us care about each
other and give extremely helpful information and lots of support and love.

I will post as soon as I find out when I have an appointment at U of M
and of course after I visit and what my experience was. If you ever need
any info, please let me know. You can email me at ccorbe01@gmail. com or
my name is Carole Corbett on FB. For myself, I am okay with people knowing
as it has helped me more than anything to know that I’m not alone.
Anything you discuss is private within this group or with me, please know
that.

Big hugs,

Carole

COMMENT

Hi,

My name is Vivian and live in Westland.

I wish you good luck in getting your mesenteric panniculitis treated. If
you find the name of a doctor at U of M that knows something about this,
please let me know. Apparently U of M required a referral to see you.

I go mainly to the Henry Ford Health System and what complicates things is
that I happen to have multiple medical issues. I not only have the
abdominal pain issue but pain in multiple areas plus I am fatigued. I am
having a colonoscopy on Monday so I will know more after that.

I am waiting to hear if any of the gastroenterologists in the Henry Ford
System have dealt with this. I also hope that U of M have people who can
help. I do not want to have to travel to the Mayo Clinic!

Take care and good luck!.

Vivian

COMMENT

PS: Where can I find your group on Facebook?

COMMENT

Msvivian. I’m not logged in so can’t pm you. My contact info is Lisa Schwart in Tulsa, Oklahoma.  My pic is my daughter and I. If you send me a friend request I can add you in. Have added four today 🙂 

Sent from Yahoo Mail on Android

COMMENT

If you can’t find me for any reason which I’m sociable you should be able to, when I get back to a computer tomorrow I’m logged in and can send you a PM with my link 🙂

Sent from Yahoo Mail on Android

COMMENT

Hi Lisa, Thanks for posting in response to my post! I have thought it over and I have decided not to join the group or add folks on as Facebook friends because then my family and personal friends will know that I have this illness and I am not ready to put it out there for everyone I know. I have only announced it to my very inner circle. If you want to contact me, you can reach me at my email address. Good luck to you or your family member if you are battling this illness. The more I read about it the more upset I get!

COMMENT

It is a private group, no one else can see it except other group members. No way I would have joined if that wasn’t true.

COMMENT

No problem – let me know if you change your mind. For thought though – the page is not searchable and it’s private for these very reason! 🙂 You’d only have to be friends with me so I can add you in there and welcome you. Up to you – other have made friendships in there and added people on their own to their private pages and others have left it with just friends with me and others are friends with several people! 🙂 Nothing shows up on walls or newsfeed and there are a handful in there that haven’t told family members that they have been diagnosed with this. It’s completely up to them – others have requested to have a family member or two in there as well, and others don’t want family in there – but it’s the SM/MP page for those members and it’s up to them who they tell and if they want to share. 🙂 We do have several people in Michigan that are being treated for their SM/MP and could share with you in the group who they use, etc. Thanks!

Take care!

Lisa Schwart Tulsa Oklahoma

COMMENT

Hello Vivian, I also have SM and have found a wealth of information through Lisa on the private Facebook group.  I think you could benefit from them as well. 

COMMENT

Thanks for letting me know. I have just decided that I need to be in the group too!

COMMENT

Vivian – 
Thanks – I just did receive it and accepted and sent you a PM on there!  My kiddo is doing ok – in the hospital again, but maintaining – per the usual 🙂  Lisa http://www.caringbridge.org/visit/macschwartz

COMMENT

Hello Lisa, I hope that your daughter is doing better. I am so sorry to hear that she has had so many surgeries. I too have this disease. I live in southeastern Michigan and have been given the run around by my doctors so I am not even on any medication. I have been communicating with ccorbe01 who is also in Michigan. I have decided that I would like to be part of your group so I sent you a friend request on Facebook. I will keep you and your daughter in my prayers! Take care. Vivian

COMMENT

Lisa, I will pray that your daughter gets through this episode
successfully. And thank you for adding me to the group. Vivian

COMMENT

Hi All
I am an Aussie from down under and don’t have access to the Mayo Clinic or other experts in the field.About 2 months ago I started to have major bloating and dissention of the stomach and the pain in the lower abdomen . My GP thought I had appendicitis and I was sent for emergency surgery. Prior to the surgery they did a CT scan which showed up inflammation near the small intestine.A follow up gastroscopy and colonoscopy and further CT scan and I was diognosed with messenteric panniculitis . I still have a bloated stomach and find it difficult to eat much as my stomach just fills up very quickly and is like an inflated balloon almost at bursting point. Have yet to see my surgeon but concerned about the state of my bloated stomach and the pain associated with it. Also concerned that if I don’t eat I will quickly lose weight and energy. Any ideas how I can cure this problem?
Have read the other posts and I am concerned about the prognosis for this disease which they say is rare but a lot of people obviously have it. Also does exercise help the bloating and pain.
Thanks for allowing me to join the group I’m sure we can all gain from an interchange of information about this disease.
All the very best to you all and let’s hope we can beat this thing

COMMENT

I am recently diagnosed myself and this disease can be very difficult to
deal with. There is a group called Sclerosing Mesenteritis on Facebook that
has 230 members from the USA, Australia, Canada, the UK and a few other
countries that you may find helpful to join as you will learn a lot. On the
Mayo a Clinic blog you need to contact Lisa Schwart as she can include you
in the group. The discussions will not show up on your personal Facebook
wall since the group is set up as a secret group. I width you the best of
luck in dealing with this disease.

COMMENT
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