Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Share this:
Margaret_Marie

Research forges path to effective treatment for sclerosing mesenteritis

Posted by Margaret_Marie , Dec 13, 2012

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 ‚ÄĒ the largest to date anywhere ‚ÄĒ 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: Carol Bolton, Darrell Pardi M.D., Matthew Clark PhD, sclerosing mesenteritis

amynatoli67

Posted by 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.

jstreed

Posted by 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: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/why-choose-mayo-clinic/con-20037148

amynatoli67

Posted by 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.

peggyanned

Posted by peggyanned , Feb 7, 2015

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....

amynatoli67

Posted by amynatoli67 , Feb 8, 2015

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?

amynatoli67

Posted by amynatoli67 , Feb 8, 2015

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

Posted by caroljean2852 , Feb 19, 2015

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

lisas444

Posted by lisas444 , Apr 15, 2015

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

marezdotes

Posted by marezdotes , May 7, 2015

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.   

lisas444

Posted by lisas444 , Jun 9, 2015

Mary - i sent you an email! :)

marezdotes

Posted by marezdotes , May 9, 2015

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.

mayoclinic

Posted by mayoclinic , May 9, 2015

While we cannot make specific treatment recommendations through this correspondence, here is some general information that may be helpful: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/treatment/con-20037148. If you would like to seek help from Mayo Clinic, please call our appointment office at: 507-538-3270. Thank you.

missymom

Posted by missymom , Jun 22, 2015

My husband has just been diagnosed with this after a 9 week hospital stay. 7.5 weeks were in the ICU. He was first diagnosed with a small bowel blockage but surgery was unremarkable. He then went down with Afib and pneumonia. It has been a long haul. After everything was cleared up he still had pseudo obstruction of the small and large bowel. He is unable to tolerate any tube feeding without backing up. He is back on TPN and clear liquids. Just this weekend he was diagnosed with SM by the leading expert in Dallas, which even showed up on x-rays from over 10 years ago (he has been hospitalized with several different illnesses). He has a complicated cardiac history, as well. They just started him on prednisone and tamoxifen but GI motility specialist doesn't seem too hopeful, as it is so far advanced and they are concerned about calcifications. I really do not want him to have surgery here in Dallas but not sure how I would get him moved to Mayo or Cleveland Clinic (seem to be the 2 best treatment options). When he needed a complicated heart surgery, he traveled to Barnes Jewish in St. Louis (Mayo was a consideration but he liked the surgeon in St.Louis). He has always been very particular about his health care and I want to give him the best possible outcome.

lisas444 likes this
lisas444

Posted by lisas444 , Jul 2, 2015

Hi Missy - We now have 100 in our group and i'd love to add you! Sorry your husband has been diagnosed with this. This disease can wreak havoc for a while as you first enter it sometimes which looks like has happened with you guys. My kiddo (she was diagnosed at age 14 and now 22) has been back inpatient the 7 of the last 11 weeks (2 more hospitalizations) (we have more days inpatient the last 2 years than we do at home again as things have escalated and she's on a new drug trial) - i understand the long stays and bowel obstructions with SM/MP. We have a pretty great group of people from all over the US and other countries. i wasn't able to read your full post - but saw he isn't tolerating tube feeds. My kiddo has been off/on TPN since 2008 - and has been back on full-time the last 2 years. Would love to add you to our group. My email is lisas444 @ yahoo if you want to shoot me an email and i can get your info and add you! :) Thanks! Look forward to hearing from you!

Lisa

marezdotes

Posted by marezdotes , May 9, 2015

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

mayoclinic

Posted by mayoclinic , May 9, 2015

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.

lisas444 likes this
mayoclinic

Posted by mayoclinic , May 11, 2015

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."

marezdotes

Posted by marezdotes , May 11, 2015

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

lisas444 likes this
lisas444

Posted by lisas444 , Jun 9, 2015

Mary - we have a few people in our group in PA and Ohio area - we have a group with 94 people in it diagnosed with Sm and/or MP :)

marezdotes

Posted by marezdotes , Jun 11, 2015

Lisa, I don't seem to be able to leave you messages on your email for some reason. I am trying to connect to no avail.

lisas444

Posted by lisas444 , Tue, Jan 26 at 12:29pm CST

Sorry - you can try and private message me on here! :) We have 206 in our group - which is a private group. :) Lisa Schwart, Tulsa, Oklahoma

lisas444

Posted by lisas444 , Jul 2, 2015

Hi Missy - We now have 100 in our group and i'd love to add you! Sorry your husband has been diagnosed with this. This disease can wreak havoc for a while as you first enter it sometimes which looks like has happened with you guys. My kiddo (she was diagnosed at age 14 and now 22) has been back inpatient the 7 of the last 11 weeks (2 more hospitalizations) (we have more days inpatient the last 2 years than we do at home again as things have escalated and she's on a new drug trial) - i understand the long stays and bowel obstructions with SM/MP. We have a pretty great group of people from all over the US and other countries. i wasn't able to read your full post - but saw he isn't tolerating tube feeds. My kiddo has been off/on TPN since 2008 - and has been back on full-time the last 2 years. Would love to add you to our group. My email is lisas444 @ yahoo if you want to shoot me an email and i can get your info and add you! :) Thanks! Look forward to hearing from you!

Lisa

tiffanyann6886

Posted by tiffanyann6886 , Aug 18, 2015

I have been diagnosed with Sclerosing Mesenteries back in June 2014. I have down 3 separate rounds of prednisone to keep the symptoms under control. Every time I have come off the medications the symptoms only come back and if not are worse. I am currently experiencing abdominal pain, nausea, loss of appetite, as well as bouts of constipation and diarrhea. I do not feel like I am getting better and this has been a daily struggle for the past 2 years ( symptoms since October 2013, diagnosed 2014). I am currently on a 5mg daily of prednisone but my GI specialist wants me to wean of the medications. I have attempted to do so but only got sick in the end and had to go right back to 5mg. Are there currently any specialist in the state of OH that can help with the treatment for this disease? Also has anyone found a cure or is there only symptoms management at this point? Thank you for your help!
Tiffany

marezdotes

Posted by marezdotes , Aug 18, 2015

Tiffanyann,I'm not sure what part of Ohio you are in, but we have a private Facebook page that has other people on it that also have sclerosing mesenteritis, or mesenteric panniculitis.  We share information on our disease symptoms, what medications have worked, and which doctors have seen and treated this rare disorder.  If you are interested in joining this group, please let me know and I will connect you to one of the organizers of the group for the invite.  I also have sclerosing mesenteritis.  I was diagnosed by CT scan in Oct. of 2014 by the radiologist, but the doctors treating me refused to accept the diagnosis and treated me for an infection.  I had a repeat CT scan the end of Dec. 2014 and the diagnosis was confirmed.  My primary is treating me now since the GI doctors shuffled me from one to another.  My primary address is in Western PA near the Ohio border, but I also spend a great deal of time in NC.  Please contact me if you are interested at: meksiha@yahoo.com.  Mary

laura1216

Posted by laura1216 , Sep 6, 2015

Hi I was just given a presumptive diagnosis of Sclerosing Messenteritis. I was in the hospital for SEVERE nausea, vomiting, and pain that was excruciating. Worse than anything I have ever experienced. I had an exploratory lap and they drained a bunch of "murky fluid" off of my belly. They noticed a thickening. Sent a biopsy. I am awaiting the results of the biopsy. I am currently on prednisone 40 mg a day. Trying to do research on what to eat/not eat to prevent a recurrence. I'm wondering if anyone has tried the anti-inflammatory type diet with any success. I had Gastric Bypass Surgery over 6 years ago. I'm also wondering if somehow the 2 are related. No one in my area of PA treats this. There is a doctor at Johns Hopkins in Baltimore they are planning to send me to. I will do anything to prevent this from recurring. It was just awful! I think they thought I was drug seeking when I got to the ED. None of the pain meds were helping and the medical resident actually wanted to send me home with a prescription for pain meds and nausea meds. I refused to leave. I had a surgeon who actually listened to me, did research and said "I truly have no idea what this is, but it seems like this is what you have." He then took the time to find who can help me. Any information anyone is willing to share I would appreciate hearing what you have to say. lsmithrn1987@verizon.net Laura

jstreed

Posted by jstreed , Sep 6, 2015

Hi Laura, Since you found this thread you have probably found some of the other information from Mayo. If not, you can start here. http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/basics/definition/con-20037148

elizbean

Posted by elizbean , Sep 30, 2015

Hi everyone, I was just diagnosed with SM today, and the more I read up on it, the scarier it is. I have been suffering with bloating, constipation, diarrhea, and pain for the last 4 months.....Doctors thought I had Diverticulitis, and have been treating me accordingly, but I have not gotten any better even after 4 rounds of antibiotics. Finally, after having a 4th CT scan in 4 months, the GI doctors sent me to a Colo-rectal Specialist who after hearing a summary of everything I have gone through went and looked at the most recent CT scan, came back and told me that I do not have Diverticulitis, but that I have SM. Any information or advice anyone can give me would be greatly appreciated.

lisas444 likes this
lisas444

Posted by lisas444 , Sep 30, 2015

Hi Elizabeth - i sent your a private message on here. I have a daughter with SM diagnosed at age 14 and she's now 22. We have an ever growing group of SM/MP members with 142 members nationally. :)

ccorbe01

Posted by ccorbe01 , Oct 31, 2015

Hello everyone. I've been diagnosed with 'retractile mesenteritis' through a CT scan. I can't find any info on it until I came to this website and that it might be a different stage of SM? I'm kinda lost as the doctors here don't seem to have any answers for me. I've been on prednisone (tapering off now) for a month. It helps a little. I'm seeing a GI in a week. I was told that if she can't treat or do anything for me, then I am being sent to a surgeon. It just seems awfully fast from diagnosis to surgery when they all seem to be scratching their heads on what to do with me. I'm trying to figure things out on my own to ease my symptoms, but not having much luck and it's getting debilitating. Sorry if this is not the right discussion board to be on for what I have. If their is some other place to get info, I would much appreciate a point in the right direction. Thank you for any help you can give me....

marezdotes

Posted by marezdotes , Oct 31, 2015

Ccorbe01, I also have SM and would love to have you join our Facebook group of 160 with variations of this disease, family who have lost a loved on to the disease, or someone who is caring for an individual with the disease.  We share our own experiences, symptoms, and treatment fails and successes.  Please contact me if you are interested and I will forward your email to someone who will invite you into the group. Mary   (meksiha@yahoo.com)

ccorbe01

Posted by ccorbe01 , Oct 31, 2015

Yes, I would like very much to join this group...thank you so much. I look forward to sharing others experiences and insights.

marezdotes

Posted by marezdotes , Oct 31, 2015

ccorbe01, please send me your email to my email in my last post so that I can extend the invite to you by Lisa Schwart.  Thanks!

amynatoli67

Posted by amynatoli67 , Oct 31, 2015

karenmaz

Posted by karenmaz , Tue, Jan 26 at 11:26am CST

I was recently diagnosed with sm and would like to join the facebook group. I live in Texas and my Dr's want to send me to the Moyo Clinic in Rochester.

karenmaz

Posted by karenmaz , Tue, Jan 26 at 11:37am CST

How long does it take to get an appointment. Are there places to stay near the clinic that offer a discount to patients of the Mayo Clinic? This is all very new to me. I will be coming from Texas. I was diagnosed with SM after a ct scan showed that is what I had and a biopsy on Dec 11 confirmed that. I have not lost any weight, as a matter of fact I have gained 10 lbs. My stomach stays bloated most of the time. I have to take a laxative every night. I have nausea most of the time and the only relief for that sometimes is to finally vomit. I am seeing a GI, Oncologist and now a Rheumatologist who really don't know which way to go besides steroids. The GI dr mentioned coming to Mayo to get treatment started and that they would continue my treatment at home.

amynatoli67

Posted by amynatoli67 , Tue, Jan 26 at 11:58am CST

I was diagnosed with SM and went to the mayo clinic, I found they did nothing for the disease. They run a bunch of tests and say yes you have it and then try steroids which makes you gain weight. I never lost weight I gained weight. I would save your money and have your GI doctor treat you with steroids at home. Save the money. I'm paying off a 2000.00 dollar bill after my one visit with them. The labs are very expensive, and I did have insurance. Good luck with your situation.

missymom

Posted by missymom , Tue, Jan 26 at 12:14pm CST

There is a GI clinic at Southwestern. My husband has seen Dr. Greta Szabo and she has gotten the SM symptoms under control. They have other patients with SM.

My husband has cardiac problems that aren't related and is very ill with that.

lisas444 likes this
marezdotes

Posted by marezdotes , Tue, Jan 26 at 1:01pm CST

Missy Mom, perhaps you might want to join our private Sclerosing Mesenteritis  Facebook room.  You have contacts that might be helpful for others on the site who are desperately looking for someone to treat them.  Marzedotes

HoytFinnamore

Posted by HoytFinnamore , Tue, Jan 26 at 9:36pm CST

Hi, karenmaz. You can learn about Mayo's campuses in Arizona, Florida and Rochester through our Patient and Visitor page, where you can find travel guides and more: http://www.mayoclinic.org/patient-visitor-guide. Here's a link to our appointment page, where you can find phone numbers or request an appointment online: http://www.mayoclinic.org/patient-visitor-guide.

missymom

Posted by missymom , Tue, Jan 26 at 1:26pm CST

I am on the FB group.

lisas444 likes this
marezdotes

Posted by marezdotes , Tue, Jan 26 at 8:20pm CST

Sorry! I didn't recognize the name. Glad you are there too.

msvivian

Posted by msvivian , Wed, Jan 27 at 7:28pm CST

Hello Everyone!

I also have been diagnosed with mesenteric panniculitis and have not started any treatment yet. I began having severe abdominal pain and spasms since the summer of 2015 so in September 2015 I had a CT scan and was told by doctors at a major health system in southeastern Michigan that I had mesenteric panniculitis but that they would hold off on treatment until I had a colonoscopy and a second CT scan confirming it. I am having the colonoscopy next week but just had the repeat CT scan yesterday and it confirmed the diagnosis.

The doctors at the health system I go to have confirmed it is rare and I am not sure that they can treat me. I am considering going to the University of Michigan Health System but I am not sure they can help me either. Should I just go to the Mayo Clinic or the Cleveland Clinic or perhaps John Hopkins? I don't know who can best help me.

I am a 62 year old femaie and unfortunately I have many other chronic conditions that may only complicate my treatment. I am obese and carry a lot of belly fat so I don't know if that is what caused this problem. Also, I was on Gabapentin for eight months in 2015 due to nerve pain caused by severe degenerative disc disease and stenosis in my spine so I am wondering if the Gabapentin could have caused this new disease.

Unfortunately, some of my other health issues are pre-diabetes, hypertension, a mild factor 7 bleeding deficiency, a thyroid nodule, hyperparathyroidism, asthma, and severe acid reflux that has been treated with proton pump inhibitors (Nexium, Prevacid) for many years so I wonder if the proton pump inhibitors caused this new disease.

All I have in my medical arsenal for pain is over the counter Tylenol and Valium and Flexeril for muscle spasms. The Valium and the Flexeril are not safe to be taken on the same day. I take 2.5 mg of Valium to take the edge off the spasms and my anxiety but I cannot take this every day because it could become addictive. If I have a severe attack of abdominal spasms, I take 10 mg of Flexeril which makes me sleep half the day and sometimes calms things down. I have had three severe attacks since August 2015 which landed me in the ER.

I am now having more problems with digestion, constipation and diarrhea.

I am shocked that so few people have this disease and that not that much is known about it so I am glad I found this group. You all have my prayers and sympathy since I understand what you are going through. Please give me any advice or suggestions that you have. I am scared to be on Prednisone for very long and the other drugs mentioned in the research don't sound like good alternatives either.

Thank you for listening to my story.

ccorbe01

Posted by ccorbe01 , Thu, Jan 28 at 12:46pm CST

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.

msvivian

Posted by msvivian , Sat, Jan 30 at 4:03pm CST

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

ccorbe01

Posted by ccorbe01 , Thu, Jan 28 at 1:01pm CST

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

msvivian

Posted by msvivian , Wed, Jan 27 at 7:30pm CST

PS: Where can I find your group on Facebook?

lisas444

Posted by lisas444 , Wed, Jan 27 at 8:02pm CST

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

lisas444

Posted by lisas444 , Wed, Jan 27 at 8:05pm CST

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

msvivian

Posted by msvivian , Wed, Jan 27 at 10:17pm CST

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!

lisas444 likes this
missymom

Posted by missymom , Wed, Jan 27 at 10:46pm CST

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.

lisas444 likes this
lisas444

Posted by lisas444 , Thu, Jan 28 at 11:21am CST

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

Edited: 01/28/2016 @ 11:22am

marezdotes

Posted by marezdotes , Sat, Jan 30 at 4:32pm CST

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. 

 

Please login or become a member to post a comment.