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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Jun 16 11:30am | Replies (1392)

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@k2aunt

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn’t having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband’s endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn’t show anything to the naked eye since he couldn’t do a biopsy since I am currently on coumadin and didn’t come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn’t last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don’t mind dealing with pain but if i get a “flare-up” it hurts to the point i can’t do anything. Thanks for listening and any suggestions you might be able to provide.

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Replies to "I came across this posting while doing a search and decided to join because it looks..."

K2aunt – How are you doing now? Are you in remission? Or are you still dealing with flare ups?

Hello. My husband was just diagnosed with MP this past weekend. We have gone for years with the pain, nausea, vomiting, etc. When it gets real bad, we go to the ER where they rule out heart, drug him up for the pain, then send him home, often still vomiting, with instructions to follow up with GI. Fortunately we had a new young doc this past weekend in the ER who suggested MP, which was confirmed with the CT. He has had CT scans in the past which have “not shown anything definitive”, but now I wonder if they were just not looking in the right place. We are in Frederick County, Md, and were wondering if there was anyone in Baltimore or DC studying/familiar with MP. Have you had any luck? Thanks for your help.

I am so sorry to hear of your husband’s suffering. I am in Silver Spring, so not too far from you. Outside of a fellow in Chicago, Dr. Pardi that I mentioned in my post is our best bet. Nothing available at Johns Hopkins, which is where I looked first. I’ve gone through the same ER trips, 3 times in 10 months until they decided it was not diverticulitis or appendicitis. I understand what you have been through. Even experienced and noteworthy GI practitioners in our area have only seen 1 or 2 MP cases in their careers. Please stay in touch. ~Bill

My husband was recently diagnosed with the mesenteric panniculitis. We have had many hospital trips. Many medications, even antibiotics because they said they do not know how to treat it since they do not know the cause. Our doctors say they have only saw 2-3 cases of this. One doctor said he sent a person to see Dr. Pardi but they did not get any relief from him. We were told maybe they would go in and trim some of the fat tissue and see if this would help. This has been going on for a little over a yr now and just keeps lingering. From what I am reading no one is finding any real answers.

Prednisone and the FODMAP diet helped me a lot.

Hi @amydSorry to hear about your Husband’s (and yours) struggle with this. Did he have the surgery? if you don’t mind saying. Is his worst symptom pain?I don’t mean to pry but I am trying to understand this disease a little better myself. When I had the pain it was under my ribs in the back on the right side. It would go around to the front right side to the waist at times. I was unable to get off the couch for about a week when it first hit, then it tapered to bouts of pain and now all but gone. This started in November of 2014 and I have just recently become asymptomatic, no more pain under the ribs. I have taken Tramadol 50 mg and no other medication. I still need to watch what I eat and try to stay regular or there will be discomfort, but it will not make me sick like it did early on.I sincerely hope you and your husband find the answers you are looking for and his symptoms improve as well. I certainly wouldn’t want to give false hope but there is always hope.@vdouglas 

Hello @bertbizDid you have issues with the prednisone?@vdouglas

He has not had the surgery yet. We are still trying several medications which most are not working. He has severe pain on both sides of his stomach which hurts if you even apply pressure. His back hurts alot as well. He has nausea at times, spasms and will dbl over in pain. The doctir told him to eat whatever because they dont know the cause but he does have diverticulitis so we are careful with that. Thank you for your reply. This disease is very frustrating.

He has been on prednisone several times then goes back to same everytime. Have not heard of the Fodmap diet. Doctor said he could eat whatever because they didnt think it was food related. We are very frustrated.

H @vdouglas, I had some muscle spasms in my legs and feet while taking the prednisone. I drank Gatorade and used magnesium oil on my legs and both of those things helped. I got off the prednisone and my hair started to come out. The doctors said the hair would grow back in a few months. I’m glad that it didn’t some out in areas so I had bald spots. But it is a bit disconcerting to be washing your hair and have bunches wrap around your wrists and hands… But it seems to be subsiding a bit. I’ve started washing my hair with CliniCure and using the conditioner and treatment.

http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ This was very helpful to me. However, I’m not giving up garlic. When you irritate the intestines by eating foods that are too high in fiber, or various other problems, the intestine is going to get irritated and inflamed. when I was in the worst pain, I had a lot of chicken broth, baked potatoes, white pasta, white bread, white rice. In fact, the GI doctor said those things would help to calm the inflammation and irritation. It did. I lost some weight because I wasn’t eating how I used to. But I did try to add herbs so there would be some kind of “green” until I could start adding in vegetables again. I’d say it would be worth a shot. You have to be really careful what you eat and how much. Small meals or snacks are much better than the three big main meals most people are used to eating. I hope this is helpful.

@bertbiz

Very helpful indeed, thank you!!